Hello all

[Guest]

Hi all
Thank you for letting me join your group
My husband Wullie was diagnosed May 2011 aged 40, we knew there was something wrong since Oct 2011 when he felt a weakness in his arm.
We both knew what Wullie had before he was diagnosed but we weren't prepared for the ALS & time span.
Massive shock as I was only just recovering from 3 brain haemorrhages which had already turned our world upside down.

My biggest problem is my husband does not want any info on his condition wants to take it day by day.

I have also been shocked reading other other threads posted.
We stay in Scotland since Wullie was diagnosed we have been given a brand new adapted house after asking to be rehoused with council wheelchair adapted with wet room. also have REACH team provided from local hospital who have been fantastic. who managed to get us a Gerberit toilet which is a godsend for us both at no cost . we also have a MND specialist who is great

Sadly my husband was told yesterday the drug trial of Dexpramipexole that was to come to Scotland will not be happening any time soon postponed here for at least 12 mths.
I am really angry that its not available to all parts of the UK.

[June Drysdale]

lol thought my angry face would go at bottom of post xx

[pete]

Hello June

Welcome to the site, You say its a problem your husband not wanting to know all the details, If thats his way of dealing with it so be it and you should certainly not get worrying about it either, i my opinion ,we each handle it our own way and whatever that may be you have to go with ,and respect his wishes ,and hope you enjoy the house and the services ,and who knows the trial may come later on

Best Wishes
pete

[SGD]

Welcome to the forum June.

Kind Regards

Steve

[June Drysdale]

Hi Pete
I do respect my husband Wullies way of dealing with MND but its hard listning to him say to doctors when they ask how are things he says ok doing fine when I know that is not true. I know I will be there to support him as he supported me. I wasn't bragging about our house which I would give up in a instant & live in a tent if my husband was ok. I was only pointing out every one should have the same back up services &
support if needed.
Kind Regards
June

[June Drysdale]

Thank you Steve
thanks for letting me join
kind regards
June

[pete]

Hi june,

Just read your post, and if i have offfened you in some way i am sorry, There was never any intent to do so..

Best wishes to you Both.

[Guest]

Welcome June & Wullie.

Wow you seem to have great support up there. As for the Dexpramipexole trial I personally wouldn't be too disheartened because it doesn't sound too promising as far as I can see.

[EMT]

Hi June and welcome.

My wife is the same as your husband, she knows what she has and the prognosis but is not interested in the details, as she says she has a fertile imagination and it would scare the .... out of her if she was to read up about it. She has also decided to take each day as it comes, but we have some difficult conversations to be had about the future regarding her wishes. We are getting a McMillan nurse via the local district nurse team to come in and discuss. It is good to see that the local council and nhs teams are coming up with the goods, it is not always the case.

Best wishes

Steve

[EMT]

PS.
I am in no way knocking my local council and the NHS down this neck of the woods , so far they have been excellent, just had the OT round to discuss a specialised arm chair for the wife so that she can get comfortable and can be adapted as the disease progresses.....