Introduction

[Nuts]

I've been lurking for several weeks--ever since we learned that my husband, my invincible superman, has ALS. We knew something was wrong, but never even considered ALS.

Today I was finally able to say the words, "My husband has ALS", out loud without crying. I'd actually practiced it out loud over and over in the car before telling my closest friends, and I still fell apart. Today I said it twice with only misty eyes and a quiver. I think I'd rather introduce myself on a strong day, so here I am.

First, thank you for your generosity in allowing lurkers to read your wonderful exchanges. I've learned more of value to me here than on any other site I've visited (and I've been a busy reader). I'm both terrified and encouraged by what I'm learning from you, but mostly it helps to know there are people as close as my computer who will understand what I'm feeling.

Privacy is important here, so please forgive me for being stingy with details. I almost didn't post at all, but after reading so much I've seen that emotional support doesn't require details, and God help me, I'm going to need it.

 

[vzandt]

Welcome. I'm sorry you had to find us. I know exactly how you feel. Took me a long time before I could say it. Still have a hard time four years later.

 

[Santa joe]

Glad you found us. You will find this site to be a source of comfort and wisdom as you walk on this journey. I have. First you cry. At least that's what I did. I don't cry as often now because it takes so much out of me. I try to be strong for my Pals which at times is very difficult. Please know that you are not alone. We are all here for one another. Reach out anytime you need to. There are so many caring, compassionate and wonderful people here.

Debbie

 

[SMP51]

well crap, sorry you have had to join us.
I read a long time before ever making my 1st posting, and I disappear sometimes. it is just to much to read sometimes, makes me sad. but the wealth of information and the great people always bring me back. I would be lost with out them, as they have help in so many ways

 

[zoohouse]

Hello, and welcome. This is a very difficult diagnosis to deal with, and we all have tears. These days I mostly cry when I am exhausted, or when I am frightened by him choking or he is in pain and I can't seem to help him. I have also shed tears for other PALS and CALS and the difficulties that they are facing. There are a few people that feel they have to protect their identity, and it really doesn't matter to me, or others I am sure. We are here for each other, and it is where I go after I have settled my husband, to catch up, and talk with people who understand. Hope to hear more from you, and maybe even your husband.

Paulette

 

[affected]

aw nuts, I'm glad you piped up and have said hi.

I'm one that hides my identity as much as I can, but I also slip sometimes as time goes on and I post more and more. It doesn't matter about that anyway, once you have posted I think 15 times or something you can private message, and that adds a whole beautiful dimension to this site as it is private.

I so know what you mean about telling with or without crying. I so remember that I was stunned when the first time I realised I wasn't crying. Then it would just depend - maybe on how strong I felt that day, maybe on who it was, maybe on how they reacted - I still sometimes cried and sometimes didn't.

Tell us what you need when you need. Yes, some parts are scary to read as they may describe what you know and fear is ahead. Do yourself a favour and quickly check the start of a topic and avoid ones that are 'too much'. You can always come back and read them later when you may need to or are ready to.

Welcome to the most elite club that no one wants to join, but hey, here we all are

 

[Nuts]

Thank you all--join the club now takes on new meaning... Maybe this is what I get for avoiding roller coasters my whole life Anyway, we got the diagnosis earlier than normal, so right now things are still pretty good (if I don't look ahead too far, make him crazy by being over protective and looking for every little sign of increased weakness, or dwell on what now will never be), but I realize now that that can change overnight. Here's my first question--have you found a way to recognize when your local support system has heard too much and is ready to bolt for the hills? I'm already torn between wanting to accept the offers of emotional support, fearing that they will fade away if I give them too much of my pain, and the fear that if I don't accept their offers they will decide I don't need them. Am I already complicating things too much?

vzant, I was afraid that it wouldn't stay easier. It seems telling new people is like learning of the diagnosis all over again. SMP51, it's good to know that I won't have to reintroduce myself all over again when I disappear. Paulette, it will be interesting to see if he finds his way here. He may need his own place (since he's going to get his fill of me off the internet), but I can see that this disease may change us in ways we can't imagine. Tillie, it's good to know about the PM. I have such mixed emotions about the public postings. Privacy is nice, but what I've gotten out of reading the threads on this forum already can be measured, and the least I can do is offer some of the same generosity to others who come looking.

Again, thanks for the warm welcome.

 

[FSHolbrook]

Hi ,

You had the same reaction that my wife and I had for at least a week after diagnosis. I think that it is a very common reaction. I am very sorry that you have found yourself here. I have found this group (ALS Forums) to be about the most helpful resource available. Our local ALS support group is great too and I would suggest that you try to find one. This is as Tillie says a very elite club.... I have found that keeping a positive attitude has been very helpful. With respect to support groups ( at least ours) you can not say too much. we have people in a variety of stages and sharing can be very enlightening because there are folks who have been where you are and they have good advice for coping(as an example I found Quinine water and French's Prepared mustard are good for reducing cramping).

Godspeed,

Rick

 

[affected]

I think that as a CALS, we have many sides to our role, but an important one is to learn what you can about the disease and plan ahead so you can avoid crisis. What I mean is organising equipment and services before your husband needs them.

We have a great OT that helps assess, plan and order equipment. I can email her and give and update and what I think and she will either do an order by email or come and assess first, depending.

It's all a bit individual as everyone progresses differently, but you can get help working out what you are seeing happening. My PALS doesn't like me getting stuff in advance, but then often it takes weeks for some equipment to arrive, so you don't want to suddenly one day find out he can't do something well at all and you have to cope for weeks without.

Then the paradox of also living a day at a time and enjoying whatever you do have. Somehow we balance the 2 opposites. That can be where those ahead in progression can turn around and give a bit of a helping hand to others.

 

[MaxEidswick]

Welcome! Lurking is good. I am the same, reading more than posting. Especially the CALS, to understand better what my wife, Sandy, is facing. I find strength here and have come to admire many of the contributors.

FWIW,

Max

 

[barneyswife]

I am so sorry you have had to join us. I lurked (kind of like that word) for a very long time, cried for a long time, was extremely scared (still am), felt very sorry for us (still do) and still lurk!
I have found out so much information from this forum and my heart breaks for all of us. I keep telling myself one moment at a time, every one counts.
Hugs
Linda

 

[SMP51]

apply for SSI disability NOW. or at least 6 months before you will need it. ALS patients get accepted right away but there is a 6 month window before you receive your 1st check and it wont get to you until the following month!

as far as accepting help, there are lots of offers, sincere I am sure, I let them know we are not ready for it yet but their name is on the list because I WILL need it one day. There are wonderful angels who take the initcive and figure out what is needed and do it without asking. One of the biggest things friends and family can to is take time to come by and visit.
you will be surprised by who steps up to the plate and who means to but doesn't.

 

[Nuts]

Rick, Max, Linda, thank you for adding your welcome.

It's an interesting dance right now, looking for ways to preserve his strength while not stepping on the things he can do--which includes asking for and accepting help but slowing down the helpers before they do too much. That's a struggle to be grateful for.
We are fortunate to have the VA. He was diagnosed quickly at the VA Medical Center, and they have been wonderful. It ooks like this center and the ALS Clinic associated with it are extremely proactive. I've read enough to realize that that is not always the case.

This crowd reminds me of a big family: lots of love and support, the occasional squabble between understandably testy members, and peacemakers who work to calm them down.

 

[SMP51]

This crowd reminds me of a big family: lots of love and support, the occasional squabble between understandably testy members, and peacemakers who work to calm them down.

ha! and like a family, no one else "gets us" but other family members :wink:

 

[affected]

And we all take on each one of those roles at various times :lol: