In denial, I think.....

[OlgaS]

Hello everyone....
What's weird is that everytime I sit down to type about what's going on my mind just goes blank, so I'm just going to type as it comes to me....
My husband who is only 28years old has been diagnosed with ALS. We just had our first child in February. Our little blessing and what gives my husband hope and strength to push on each day.

I keep expecting to wake up from this. This can't be happening.
I know losing someone at ANY age is so painful but why him, why now ? He's so young, this shouldn't be happening. We just had our little boy, I need him to be here with us.
When he just got diagnosed last July that's all I thought about 24/7. And then at some point I think it was too painful for me to think about so my mind just blocked it all out.
I've gotten really good at pretending it's not happening. But it is, in front of my eyes I see him needing more and more help with simple things.
Just recently he told me he's not able to write too well. Has difficulty putting his socks on and more heartbreaking than anything else (for him I think) is that he can't walk around carrying our son because he's afraid he will trip and fall with him.
I just feel so overhelmed sometimes because I don't know where to start. I need to look into getting him on disability and me staying home to help him but I just don't know where to even begin. I wonder how long it's going to be before he can't work etc...just so many things to worry about......

Olga

 

[joelc]

First, welcome to the forum. Sorry you have a reason to be here.

Second, you have not lost anyone yet and don't have to for many years. Unfortunately there is no way to predict how his progression is going to happen or how fast. It could be years yet so try not to worry as it does not help.
He can still have many years yet before it progresses to a point he can't function too well. Even after he is wheelchair dependent you can still have a great life, it is all up to you and the way you are able to accept what is happening.

 

[Gelthling]

I can only imagine what you would be going through as a mum to three kids under four. When I took my mum to the MND clinic this month there was a young bloke there (Hey I'm only 34!) who had MND and he was 26, and that put my mums disease into perspective and she wrote - I have had a great life- I said to her You still have a great life! Don't give up just because you have the diagnosis, but I understand how it can be very upsetting as I still cry at different things my mum has difficulties with. Joel is right - you don't know what happens with this disease, but if it has taught me anything, live in the moment and enjoy all that you have today.
My mum will still try to pick up my 9mth old son when I'm not looking (she uses a walker now!), so at least your husband is thinking about safety - just make sure he gets plenty of cuddle time with your 2 year old!

 

[Marjorie R. Wilcox]

Olga,
It is so tough just reading your post. My heart goes out to you both. I don't agree though that you are in denial. It sounds like you are accepting things, making plans, and taking safety measures. You are going to have to be strong, and I see that you are able to muster up that strength. As Joel says, your lives together could go on a very long time. Along the way though, as Beth on here said, " Hope for the best but expect the worst." You'll find that if you continue living your life and just take care of things along the way, your ALS journey will be gratifying regardless of the circumstances. We can't change our lives sometimes, but we can control our attitudes. Expressing your love will give him the stamina and stressfree life he can have along the way. God bless. Marjorie

P.S. My husband had his diagnosed 21 months ago.... slow progression so far.

 

[OlgaS]

Thank you all for your replies.

Marjorie, thank you for what you have said. I'm in tears because that's all I wanted to hear, that someone understands. Not that I want people to be like "Oh, poor girl" all the time but I think especially when I wrote that I just felt like it's so unfair that he's in this situation now ( new baby) And again, I do understand that it doesn't matter what age you are, losing someone to ALS is equally painful.

I am so thankful for each that we have together. And in a strange way it did bring us closer together. I think it just kinda of gives you a wake up call that each day is precious and for us to enjoy each moment that we have together.

Again, thank you all !

 

[hopingforcure]

Olga,
I think we have all been were you to some degree. It is so hard to come to a place of acceptance. I hate to hear of a young new father sick, I am so sorry for all of you to face such a hard time, but like Joel and the Majorie, and others have said, it does not have to mean life is over, eventually you will start taking things as they come, and preparing for the next change, they may be slow, and you may be able to become somewhat comfortable with the changes. Call the ALSA assoc. SS. and MDA, you should be able to get some guidance from them, and they may have a therapist or a counselor to help you and your husband, I hope you have family and friends to help you through some of this. We are hear for you guys, anytime..