Hello i'm new any advice please

[nicki41]

Hi
My name is Nicki and I'm from England. I have joined a support forum in the uk , but so has my mum and sister. My dad was diagnosed with mnd 4 weeks ago and I wanted to join another forum so I could ask questions without my family seeing , does that sound bad?
This news has completely devastated my family and my dad has given up . He has gone through alot of emotions and we are all trying so hard to stay positive but it is so hard.Dad is reading ' Eric is winning' at the moment which I think is helping , but dad has gone from an active hard working man to a frail old man in less than a year. I am struggling to deal with my emotions as I know my lovely dad is dying and I cant bear it .
Can anyone help me come to terms with this and can I just say if their is a god , why would he give this hideous disease to a good and lovely person.
Thankyou
Dad is 67
Nicki

 

[Jennifer51]

Welcome, but sorry you are here....most of us have been where you are now and so totally understand all your worries and concerns, and will try to assist with any queries. I am from the UK as well, just outside London, though family are from the Bristol area. Word of advice, join the mnd assoc, apply for the dla, carers allowance, and get everything you can from your local authority. Mine have been superb. See if you can get a second or 3rd opinion and try to get to an mnd clinic...I go to Barts and have a wonderful neuro there, and have put my name put forward for any any help, new drugs or treatment that may can crop up. I am visiting family in Chester this weekend where there is a conference on stem cell treatment. Ask anything you need or private message when you are able. Thoughts are with you.

 

[Kevinski]

hey

Most people in the als community will tell you that the book eric is winning is a big sham save yourself time and money ,noone has been cured by the practices of that bookbe leery of cure alls good luck

 

[crystalkk]

Nicki,

Welcome to the forum, sorry that you have to be here. It is normal to go through all the emotions, most pals
do come to grips and accept it. You need to think about today and enjoy the time your Dad in the moment. Not think about what is going to happen in th future. Nobody really does know anyway. I lost my Mom when she was only 49 years young to small cell lung cancer. She died
6 months after her diagnosed. Try and keep his spirits up and keep his mind off of the disease and on the things that he can still do and enjoy.

 

[hopingforcure]

First welcome.. It is a good thing that you have found us as your safe haven.. You can be as private as you want, and ask us anything that you want to know. This disease is a bummer NO doubt about that, but you will see that the kindnest PALS AND CALS on the earth reside on this board. If God look's at this board he would be very proud of his people.. We all face battles, we have one that seems a little more daunting that's all.
We all here for so many reasons, but the one reason people are on this forum is for CARING...

 

[BLPhill]

Nicki,

Welcome to the forum. I'm so sorry to hear of your dads DX, he will settle into his new normal though. Please don't be fooled by that book "Eric is winning",thousands of dollars could be wasted without any good. That was such a nice welcome hopingforcure.

 

[redneck charger]

Welcome Nikki.. Sorry to hear of your Dad's DX.. But the best advice I can give you, is this the place to be while going through this with your Dad..You can get idea's here, plus lean on us when things get rough..

 

[rachelg]

Hello to you

Hello Nikki

I too am fairly new to the forum following my husbands diagnosis (99% sure PBP) last week. I too am from the UK, Somerset.

I am so sorry to hear of your dads diagnosed. I am struggling to come to terms with the diagnosed and am not quite sure how to feel. Our family decision is to try and carry on as normally as is possible - for us normal feels safe if that makes any sense.

The support and advice I have received on this forum has been fabulous, people have been very caring.

I don't have a wealth of knowledge - yet - but if I can ever be of any help, please let me know.

Rachel