Young Onset information

[CraigC]

Dandare,

Please also see this factsheet:

Travelling and going on holiday (http://alzheimers.org.uk/factsheet/474)

Kind Regards
Craig

 

[stevebeilgard]

C.a.d.a.s.i.l.

in 2002, an english doctor named jack sheilds had a form of dimentia that was unknown. he then discovered that he was missing the notch 3 gene, a hereditary condition most commonly found in the brittish empire. well, my canadian wife's mother was an irish war bride.
my wifes sister had it since 2006 and passed away in may. my wife was diagnosed at the Mayo Clinic in april of 2007. cadasil is also referred to as alzheimers on steroids or rapidly progressing alzheimers. it can start as early as 30, but seldom later than 60. there is no known treatment, but she's been using the same medications used for common alzheimers like the excelon 9.5 patch and lexapro. the mayo gave her 1 to 2 years.

we've since gone to a natural specialist. what we are doing is eating all natural foods, and lots of brain foods such as salmon and tons of pills like fish oil and vitamins. on top of that she takes daily rations of ambortose and l-argenine. now, after 4 months of treatments and electrical shocks i actually think she is improving some. time will tell, but i find myself optomistic for the first time in 18 months. she's happier, lost 45 pounds, has more energy, and feels better now than she has in years. is there hope out there, or is this just a fluke?? i don't know and i don't care. all i want is more years with my sweetie. she was diagnosed at age 56 and is now 58 going on 90....

we went to penrose, colorado for treatments. i put 1100 miles on my truck every week, and spent money we didn't have to spend, but i'm glad we did. they also have an office in south carolina. if anyone wants more info, email me at Moderator note: email removed as per forum rules. If you wish to contact poster please use the PM system.

 

[Psalm121]

New user!!!!!!!!

Hi to all i am new to all this so please bear with me. my wife {41} has just been diagnosed and i am looking for any help you "regulars" can give a "new boy" Nick

 

[christine_batch]

Hi Nick

Welcome to Talking Point.

I am sorry to read about your wife. My husband was diagnoised aged 57.

If you look on the main page there are lots of fact sheets to print off.

Also, if you check for a local Alzheimer's Branch they will give you so much help and support.

More people will come along offering advice.

Best wishes
Christine

 

[jackie place]

HiNick

I am also new ro this page as my husband was diagosned at christmas so I am learning all the time he only 62 we are all here to help one another and believe me it does help to sit at the comp and talk .


Please feel free to get in touch I would like to be a friend to you Love Jackie x x x

 

[jenniferpa]

Hi Nick and welcome to Talking Point.

41? That's truly appalling (it's awful for anyone of course but so young...)

Anyway, feel free to post anywhere: here, the main forum, the tea room if you want a bit of light relief.

Any specific questions, you probably should start your own new thread, but it;s fine if you want to add to an existing one as well.

Best wishes

 

[rallycat]

Hello,all

I.am.a.care.worker.for.a.wonderful.lady.with.FTD.andSemantic.dementia....I.do.not.have.the.relevent.experience.in.thisfield,but.really.enjoy.the.time.i.spend.with.her......Does.anyone.have.any.tips.on.how.to.improve.her.enjoyment.of.life???It.can.be.quite.stressful.for.both.of.us,but.i.find.the.good.moments.more.than.make.up.for.the.anxious.and.fraught.moments.....She.is.only.in.her.early.50s.....Any.help.most.appreciated!!!!

 

[Bookworm]

Hello rally cat - a very warm welcome to you - I'm sure people will offer advice - surely it would depend what stage she is at - e.g. is she still able to enjoy photos from the past or are you thinking of children's games - let us know what she likes currently.

May i ask - why does your post have many full stops in it??

 

[alisonhorspool]

thank you brucie for putting this link on i have been diagnosed at the age of 48 and it is not easy to find info to help for people like myself who are so young.

kind regards alison

 

[christycain]

Thanks for the information

All-
I am grateful for this information. I live in the states and the information and support for early inset and dementia does not begin to reach the information that this was in this link.

Keep up the stream of information.

christycain

 

[dementia]

post

Great post and link. Some useful info there.
My wife runs an early onset dementia day centre one day a week and its frightning how young some of the people are that visit.
Great read

 

[Betty272]

Denial

Hi
Has anyone got any advice as to how to get the person with dementia to come to terms with the diagnosis?
My partner has early dementia (age 53) says he's fine, he doesn't understand why he has lost his job. He doesn't believe the scan result. I think he has borderline aspergers (un diagnosed) before this, which complicates it. He has always been low on empathy and very rigid in his thinking, it appears almost impossible to convince him that he has a problem.
Any advice please???

 

[Grannie G]

Hello Betty

I really am unable to offer any hope you`ll be able to persuade your partner to accept his diagnosis. It can only come with time, if then.

It could be a defensive approach on his side. Who knows what is going through his mind.

Many people are in denial to start with and your partner is so young you can expect denial from him even more than from someone older.

There is an item called Compassionate Communication which you might find useful . It is a tall order but even if you are unable to use it to the letter, it`s good to know of it to refer to.

http://forum.alzheimers.org.uk/showthread.php?t=30801

The best support you will get will be from Talking Point. Please stay with it.

 

[catherine129]

hi

Hi,
My Dad is 61, and has had Alzheimer's for 5 years now. He has gradually declined, to the point where he has great long term memory, but anything recent forget it (excuse my choice of words) In fact, today my Mum and I were worried sick when he wasn't where he was supposed to be, we couldn't get hold of him and we were both at work. Luckily Mum found him, where he said he was nearly three hours earlier. He has been ok up until recently to go to very familiar places.
I haven't been on here for ages as I find it too upsetting, but I need to face reality as he is getting worse, I can't really talk to anyone as my Mum is struggling to cope, no one else close knows how to help and my brother is burying his head in the sand. I find it hard, as I have two young children of 2 and 5, and am currently 8 months pregnant and work 30 hours a week. I try to help my mum as much as I can, but don't feel as though I support her enough. I think if my Dad was older, I could maybe accept it more, but already he isn't my father figure anymore, and he can't hold a conversation without going off an a really wierd tangent. Where has my Dad gone?

Sorry, didn't mean to ramble quite so much

Catherine

 

[sue38]

Hi Catherine,

Sometimes posting here how you feel can make a huge difference when you don't want to upset family more than they are already upset, and friends (however well meaning) just don't get it.

I remember that sick feeling when my dad would go missing. He wasn't aware that he was 'missing' - as far as he was concerned he was where he wanted to be. It was the rest of that were in a blind panic, imagining the worst .

On a practical note, does your dad carry ID on him? I got a card made that had my dad's picture and name on, our contact numbers and details of his condition. As he always took his wallet with him this was the best thing for us. Others have had ID tags made to be attached to key rings which may be appropriate if your dad always takes his keys with him. You can also get bracelets and pendants.

When my dad was missing one time and we had to get the police involved they asked for a photo of him, so it may be worth having one ready just in case. I don't mean to alarm you, but from my description of my dad (tallish, grey hair, medium build) it could have been anyone. There are tracking devices but I have no experience of them. We have just bought a simple mobile for my mum (she doesn't have dementia but could only use the old style very simple mobiles) which is quite good as it has a red button on the back that you only need to press and it will call your SOS numbers in order (I think you can put up to 5 in). Of course your dad would have to remember to take it with him and remember not only HOW to use it but also that he NEEDED to use it. It wasn't expensive (less than £30 I think), so may be worth a try.

Your dad is very young, and although it hurts at any age when you become the parent to your parent, it must be harder with early onset.

 

[catherine129]

Hi Sue,

Thank you, the photo ID is a great idea, as my Dad is pretty average too. If anyone looked for him, he looks as normal as anyone else. My Mum has given him his door keys in a chain round his neck so he doesn't lose them, he has my door key too. So a tag to attach is a great idea
At the moment, he does know that he's lost, but he gets into a blind panic about where he is, and cannot function or follow instructions once he gets to that state, which doesn't take much. This is in a town he has known for 26 years .
We got him a really really simple mobile last year with our numbers programmed in, 1 is my mum, 2 is me, all he has to do is press it. But he doesn't seem to be able to comprehend that now. He is so variable, cos he rang my Mum from his mobile, then half an hour later he just couldn't.

Thank you again, very much appreciated

Catherine

 

[Aisling 1978]

Dealing with late stage dementia of my dad 56 years old & decisions like PEG feeding

Hi All.

I have often viewed these threads throughout the course of my dads illness, but untill now haven't engaged directly, but me and my family are now at a loss, and would love to get support/advise from people in the same situation. My Dad is just about to turn 57 on Friday, and he has had early onset dementia for 4 years that we are aware of and who knows how long it was there before this. In this time, daddy has detoriated at a rapid pace, loosing speech, eating, walking, toilet function about 14months ago. Since then we have fed him calorie drinks through a spouted beaker. We have always kept him at home, with a great care package support from the NHS. What we do lack hugely though is anyone to tell us what happens next and what to do to make him as comfortable as possible. My mum is Daddy's primary carer with support from me and my 3 sisters. We have reached a very low point in this horrendous illness, that has robbed our family of a father, Husband and Grandfather, in that we are struggling to get drinks into him any longer, and are now faced with a decision on tube feeding. I would really appreciate anyones experience in this area, as i am against it, but understandably my mum cannot bear to see my daddy fade away.

I have come onto this thread as i really find it hard to share experiences with people when they talk about their 80+ relative, as perhaps harshly i believe i could accept this illness if my dad had lived his life, but in someone so young, with so much life still to live it is unbearable. I am getting married at the end of the year and while i would love him to be here for that, he is already unaware of people and life as he sleeps 22 hours of the day approx, i just want him to be comfortable.

I am sorry for the long post and would take any advise that you can give.

Many Thanks
Aisling

 

[Suemck]

Out in the open

Hello, I have just joined the forum. My husband is 57 and I have been worried about his memory for some time. I have tried to approach the subject over the past two years but to not much avail. My son and daughter have also commented that they are worried and it had become a real 'elephant in the room'. My husband is struggling at work, I can see.
Last night I asked him whether he had phoned his sister. He said he had but when I asked what they had talked about he couldn't remember. Instead of covering it up, for the first time he looked me in the eye and said 'I can't remember'. That was the catalyst for an outpouring of how it has been for him and the first acknowledgement that something is seriously wrong. His mother had relatively early Alzheimer's and died in her 70 s so he has been unable to cope with talking about it. We are now going to the GP this week. I am enormously relieved but sitting here in shock. I love him so much.
I have read stories on this forum and I realise that most of you are far worse off than us but you will all have sat here early morning while everyone else is in bed and wondered how it was going to be from now on....

 

[Izzy]

Hello, I have just joined the forum. My husband is 57 and I have been worried about his memory for some time. I have tried to approach the subject over the past two years but to not much avail. My son and daughter have also commented that they are worried and it had become a real 'elephant in the room'. My husband is struggling at work, I can see.
Last night I asked him whether he had phoned his sister. He said he had but when I asked what they had talked about he couldn't remember. Instead of covering it up, for the first time he looked me in the eye and said 'I can't remember'. That was the catalyst for an outpouring of how it has been for him and the first acknowledgement that something is seriously wrong. His mother had relatively early Alzheimer's and died in her 70 s so he has been unable to cope with talking about it. We are now going to the GP this week. I am enormously relieved but sitting here in shock. I love him so much.
I have read stories on this forum and I realise that most of you are far worse off than us but you will all have sat here early morning while everyone else is in bed and wondered how it was going to be from now on....

Good morning. I'm so sorry you are facing these problems but I'm so glad you've found TP. My husband didn't have early onset but I can still relate to how you must be feeling as I was 50 when Bill was diagnosed. It's really good that your husband has accepted that there's something wrong and that you're going to the GP. Hopefully this will lead to some medication which will help.

You will find lots of understanding and support on TP. I know there are many people who have partners who have early onset. I'm sure they will be happy to share their experiences - as will everyone else. Take care and good luck with the appointment.

 

[Suemck]

Thank you so much Izzy.