Diagnosed

[smiles]

Hi new to this,

Its midnight and 10 hours ago my husband was diagnosed with Picks disease. The consultant said that we had been lucky to have been refered so quickly to a specialist. He has been working with the team at Cambridge with Dr John Hodges on early onset. I would loved to know his definition of unlucky!!!.
In the meantime my husband is blissfully unaware of the implications of his diagnosal, told by the specialist the name of his disease and that the front of his brain had been affected, my former barrister had no questions as to what this would mean to him or to the family and was more concerned to be on the way home so that he could go back to bed. I however felt that having been given the grim news, I was sent off with an attitude of "now get on with it, we will see you in 3 months". Happy Christmas to him too.
David was informed that he would no longer be allowed to drive as his reaction times will be affected, I joked that I would be his personal chauffer - so my caps on " jump aboard were off on a magical mystery tour".
If there is anyone out there with a partner in their 40's I would love some advice/ know that I am not alone.
Still smiling just, if only for our 6 year old.

 

[jc141265]

Smiles....you're a toughie and a softie at the same time aren't you? Brave lady!...All my sympathy to you, I cannot imagine how devestated you must feel under the brave face...well I can imagine and its terrible to think of, and so i am sure it must be far worse in reality...
As for people and there habits of saying 'You're lucky' they do it all of the time...I remember the nurses saying to Dad again and again how lucky he is to have visitors, how lucky he is to be getting two desserts...and I was thinking the whole time...poor compensation really!
Its going to be a rough ride and sometimes you aren't going to believe me...but you will survive and you can come out of this stronger in the end...nevertheless it is a tragedy for you, your husband and your daughter...
Wish the best for you all, and please know I am always dropping in here every now and then so if you need an ear...just send me a private message...sometimes we just need to get the emotions out and typing about it helps with that...
Hugs,

 

[Brucie]

Hello smiles, and welcome to TP.

I hope you will find some help here - sometimes just having others who understand your feelings can help immensely.

For the moment you need a bit of time to let things crystallise in your mind because, of course, this is going to affect all your futures.

Until that next consultation, try and learn as much as you can - not only about the condition, but also about coping strategies. Hopefully Talking Point may help you in both.

A major strategy at present might be to take each day as it comes and enjoy it for what you can get from it. Children often simply accept these things, at least I have found that so with our two grandchildren aged 6 and 10, so even if you could, don't exclude them and share your worries in ways they will understand... cuddles etc.

You need to look after yourself, of course, for all your sakes.

I imagine there will be some additional major concerns though - for early onset families they often centre around the effect of losing maybe both earners in the family. How are you placed in that respect?

Early onset in 40s is unusual, but certainly not unknown. My wife was only just into her 50s when her dementia hit us. The different conditions affect everyone in different ways, of course.

Take care, take it slowly, and do use Talking Point as much as you need. There are lots of people in similar boats out here.

 

[Grannie G]

Hello Smiles.

How devastating for you to have your very young husband diagnosed with Picks disease. In some respects, be glad he is unaware. My husband knows what he has and is very frightened and unhappy.

He was 73 when diagnosed with Alzheimers and all our plans for retirement went through the window. But at least our son was adult and a parent himself. You are so young to have this bombshell dropped on you and so is your child.

But you sound strong. I hope you will be able to remain strong. The diagnosis cannot be changed, and whatever time of life it strikes, we have no alternative other than to get on with it and make the best of a bad job.

I found TP a lifeline and hope you will too. There are so many people who know where you`re at, who will share your ups and downs, and who will always be here with support.

Take care and keep in contact.

Love xx

 

[smiles]

Thank you for your kind replies they made me smile through my tears at work yesterday when I logged on during my lunch break. I have posted a new message asking advise as the mystery tour has definately taken a wrong turn, the brakes have gone and I'm out of my depth. Smiling through my tears and looking forward to my daughters nativity play tomorrow.

 

[jackie1]

Hello Smiles,
Sorry for the delay in replying I;ve only just got the internet back and it's still very slow.

My husband is 54 and was diagnosed 18 months ago with alzheimers. I'm 45 and we have two children 7 & 10. I know how scared you must be feeling right now, terrified of what the future may hold and more importantly how you are going to hold everything together for your child. You will find the strength somewhere.

Although I'm sure there will be days when you just want to hide and cry - I certainly get a few of them.

I;ll send you a private message so that we can chat further if you would like.

Take care
Jackie