Hi my names samantha

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Samantha123

New member
Joined
Oct 20, 2016
Messages
5
Reason
Loved one DX
Country
Nz
State
Nz
City
Timaru
Hi my names sam my dad has mnd and going down hill quickly
 
So sorry you have to join us here Sam.

When you are ready, tell us a little about where he is at with his MND (ALS as being in NZ it's called MND like in Australia and the UK).

This is a really hard road, but we will do what we can to help.

There are some great posts at the top of the General Discussion section - one on being newly diagnosed and one on anticipatory planning that may help you.

And you can read back on posts here and search here on things you might want to know about.
 
Im new here so I thought I'd tell ya a bit about me ..my dad was diagnosed with mnd in April this year just a week after his wife was diagnosed with terminal cancer . She's now passed away after a short 10 weeks my dad lives in another town from me but we constantly talk and video chat . It started on his leg and in the past 4 weeks has progressed everywhere . I'm all for him to be as independent for as long as possible but it's getting to the point where it's no longer possible aND he is going to come live with me and my family for as long as I can look after him . I have been strong and organised everything I can but he doesn't want to talk about what he wants when he goes or can't breathe on his own anymore is this normal? I feel like crying daily because I'm going to loose my dad but feel bad for doing it as I'm not the one who's got mnd is this normal also? I'm really struggling at the moment as I don't think he has as long
 
Perfectly normal!

There are so many levels to the grief, and it can be very overwhelming.

Those discussions about what he wants are so important, but really difficult to talk about and pushing it is hard. Maybe once he gets there to live with you it will be easier to find some ways to talk about it maybe with a health professional starting the conversation up for you.

My Chris wouldn't talk about much of that either and usually it worked best to have someone else start the conversations. Not always, but sometimes it did work.

We can't predict how long anyone with MND has, and on this forum we see all the differences. My Chris only got 11 months from diagnosis, though he had struggled for around 6 months before that. Some have been far faster, while some get some really good years.

We learn to try to just do one day at a time, as today is all any of us have in truth. It's not easy, the big picture does grab us all at times, but it helps a little.

I'm very glad you have reached out for some support. I will just mention I met Sam on fb and whipped her over here before she could blink :)
 
Yes yu did tillie and I'm very great full u did has given me somewhere and people that are going through the same thing to reach out to
 
It's not quite as instant here as fb, but in the morning you will find lots of welcomes from people who are just amazing as they find their own way through this nightmare.

I'm so glad you found me on fb xx
 
Sorry to hear about your dads dx and the loss of your mom. That's so much for you to handle. Try to just take one day at a time and enjoy the time with your dad as much as you can.

This forum is wonderful for both support and information. We are here for you.
 
So Sorry you need to be here, but you will get a lot of support.

Some people are just not comfortable talking about arrangements and decisions. Give your dad some space with it, it is a lot to deal with. I have the opposite situation I want to get it all sorted but my husband is less comfortable. I have written my wishes down and he knows where to find them and we have left it at that.

I found it quite emotional but it did make it easier to get through without anyone seeing me get in that state. That may sound weird, but sometimes getting the words out is the worst bit.

Wendy x
 
Welcome, Sam! I'm sorry that you have to find yourself here. But I'm also glad that you have found these forums. Here, you will find folks from both sides of the equation - caregivers as yourself (CALS) and other people with ALS (PALS). Although questions are typically asked in forum areas appropriate to the post (i.e. PALS or CALS area), you'll find that you can benefit from answers and insight from everyone. There is an extremely supportive community here... forum moderators who work diligently to keep us all safe, sane and respectful... and a forums owner who really does care.

Look for the "Stickies" at the start of each forum area. These have been created to give you a quick jump start. And when it again becomes a bit overwhelming, push away and take a break. I hope you find us warm, welcoming and a place to return to...

Jim
 
I just want to say thank you to everyone for being so welcoming I have woken up today feeling so much better so thank you
 
Welcome Samantha & sorry that you have to be here.

Right now I think it would be better to take one day at a time, rather than looking ahead at the bigger picture. It can be very overwhelming.

Joan
 
Hi Sam,

Welcome. This is definitely the place to be. I only found it this year, and it's been wonderful, although we've been dealing with symptoms and then dx for close to 12 years. My DH is my PAL and he chose to vent 6 years ago.

There is so much strength and wisdom here. And no question is ever stupid. WE all learn from each others questions everyday.

Take your time, relax as best you can and go ahead and grieve, we all do. You'll think you've passed that area at some point and then something will trigger the feeling again. It's normal, very normal.

Hugs to you,

Sue
 
April is not that long ago, Samantha. Give him some white space and let him know you are ready to listen to his preferences or thoughts in any form, talking or writing. If he doesn't respond, you can start with questions that begin with: I think it would be your wish to...am I in the ballpark?

There may be people that he wants to consult. But getting paperwork done is a good idea (health care power of attorney and advance directive, particularly). Sorry you have to be here.

Best,
Laurie
 
Hi Samantha, sorry that you have to be here. My husband does not talk to his daughter about his disease or his decisions. She is in her thirties. Its not about her its about him. The past few weeks he has opened up more with her. Iys been over a year since diagnosis.

Give your father some time. Its not uncommon for them to put this disease out of their thoughts. Its so hard for them. I cried a lot in the beginning and still have my breakdowns. Allow yourself to grieve its the only way to keep the screaming in your head down. I take drives, walks or just wait until I am alone. This is so hard but you can do your very best to spend as many happy moments together as possible. That's what our PALS really want. They have to deal with their own losses so seeing our pain is almost to much.

I know you will find support here. Everyone here is amazing and every question has been answered. You can pour your heart out with us and it will help you through some of the fear.
 
Hi Samantha, Sorry you are going through this with your father. The diagnosis is a shock and it takes time for all involved to come to terms with it. My husband has never wanted to talk about it very much and, initially, only shared worries and concerns with me and a close friend. I don't think he wants to burden his children and he said early on that he was worried about them and how they would handle the coming months and years. They are all very loving and mature and they want to help him face the challenges that this disease brings - much as you do.
I hope you find the forums to be helpful. It is often good to just read and know others understand the pain, frustration, and fear you are feeling.
 
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