Wife recently diagnosed with familial ALS

[MrCrumbs]

Well, I don't exactly know where to begin... So, for the sake of filling up this white box i'm typing in, I sum up where we are at today.

My wife, 32, and I, 33, had our first child just shy of a year ago. I work from home and she decided to be a stay at home mom. It all started back in May when she started having some weakness in her right arm which soon moved into her left arm. She essentially is unable to raise her arms past 45 degrees to her shoulders. Along with the weakness in her arms, she began to have some weakness when speaking and trouble breathing. She describes breathing as if she only has one lung.

Of course we knew that it could a number of things, but we decided to rule out ALS. The wife lost her father to ALS she she was around 5. There have been many others too so that is why we decided to look into testing for ALS right away.

Fast forward through several appointments with 2 certified ALS Neurologists, tests/blood work, a long bout with the insurance company to where we are today. We decided to go ahead and pay for the genetics tests looking for the FUS R521G gene... I think that is the one?... The results came back positive which confirmed the doctors' diagnosis.

So here we sit, planning our child's 1st birthday all while trying to figure out what we do next. Everything in me wants to hang my head down and cry, which I have done... It's hard to plan your next move when you don't feel like moving.

That being said, I am in need of some warm advice.

 

[diagnosed2016]

I'm sorry that you have joined the club here. My husband also has FALS and we have small children so I've been in your shoes recently.
It's going to be hard for a while, dealing with the initial shock of everything and adjusting to rethinking your future. It's ok to be devastated. It's ok to cry. I read up on the disease a lot, researched alternative treatments, educated myself on what we were in for. That has been helpful to me because I'm a planner.

 

[Atsugi]

I'm sorry to have to say welcome, Crumbs. 32 is way young. I've read that R521G strikes young. My wife (RIP) had C9orf72, which our children might have inherited. (We're not going to test for it.) She had ALS at the age of 50.

Unfortunately, you'll probably find your new role--caregiver--to be demanding and exhausting. First up, check your life insurance situation. You might benefit from an estate attorney. Have your wife make Advanced Directives. Call Social Security. Personally, I would arrange for visits from relatives and the most important friends.

I don't suppose she's a veteran, is she?

 

[lgelb]

Welcome, Mr. C. I'm sorry you have to be here. This will take a while for both of you to process and in some ways, you never will.

Give yourself time to grieve, be angry and mourn what you have and will lose. Then decide as a couple what is most important to the rest of your lives together and make it happen.

Best,
Laurie

 

[affected]

I'm so sorry to see you join us, we will do all we can to support you both.

 

[soonerwife]

So sorry to hear of you wife's diagnosis. It's a horrible shock. You have come to the right place for support. We have all been there.

 

[adrivtham]

Hi all,
I am so sorry for your wife and your family, you guys are so young to go thru this...
My husband was diagnosed in February, he has the C9ofr72. I have been crying all the time, but I am trying to get things done as modifying all the things around the house and trying not to lose my job because this illness is really expensive.
This times are were everybody in the family needs to be engaged and helping ( that is no the case for me his children don't even call) but if you have family they need to help, as time goes on it becomes harder and harder.
Sending you a big hug

 

[FamilialALS?]

Mr I'm sorry to welcome you here. As alienated from normal life as most of us feel with ALS part of our daily reality, this forum is a sanity saver for most all of us. There are members here that are or have been where you are. That was a tremendous help to me during the course of this disease. Post or search here and you will hear from kind, smart, and caring members.

It is especially hard for us to meet young families going through this, but know you are not alone.

 

[Duker52]

Sorry to welcome you into our family. You are surrounded with kind and loving people here in this Forum. I was diagnosed with familial ALS this year. I have bulbar onset. It is devastatingly numbing at first, but after a while the physchological pain eases up. Now we take it one day at a time. No question or concern is off-limits because we all have the same concerns and fears. Bill

 

[diagnosed2016]

Another thing we are doing which might give you a goal together (once the initial shock passes) is we are trying to prepare lots of things for our kids so they can know their dad- he is writing journals with lessons he wants to teach them, his friend is filming interviews with him about his life so the kids can watch when they are older, etc. I think that any terminal illness with young kids can be doubly emotionally hard because you mourn for the loss of that parental relationship for your kids in addition to a spouse, so do what you can to give your baby things to hold on to, even though she won't remember first hand.

 

[scaredwifetx]

I am sorry that I am welcoming you here. As you have seen...there is a ton of support here. Take the time to absorb the shock. Any questions or concerns you have can be addressed here.

There are first steps and one if them would be to contact the local ALS Association. They helped us to figure out where to begin. Live each day by not counting each day.

 

[swalker]

I will join the crowd in saying I hate to welcome you here, but welcome nonetheless.

Take some time getting adjusted to your new reality. I encourage you to read the amazingly helpful information on this site as you have the ability to do so. It can be hard, but it is part of accepting the reality of your wife's diagnosis.

You have probably already heard this, but I want to reinforce that since this is a progressive disease, it pays to stay ahead of the game with regard to getting equipment and modifying the living situation to accommodate her diagnosis.

I will keep you in my prayers.

Steve

 

[MrCrumbs]

The unknowns drives me bonkers... We have our first clinic next week which should give us some information. As a husband and caregiver, what should I do now instead of later?

 

[MrCrumbs]

I don't suppose she's a veteran, is she?

She is not a veteran.

 

[Nuts]

I am also so sorry to welcome you here, Mr. Crumbs. My youngest son is your age and he and his wife had their first child 4 months ago--I just can't imagine...

You've recieved a ton of wonderful advice. The shock takes time and the grieving goes on and on. I cried every day for 9 months and then started taking Lexapro. It made me able to control the tears and get on with life. Here's the thing about NOW. If we spend our time grieving now, we lose that time forever. Let yourself absorbe the news and feel the pain, but then make yourself as busy as possible living NOW. I love diagnosed's suggestion for making videos and writing to your child.

You ask what you can do now instead of later. Learn as much as you can handle (sometimes what you learn about this disease is too much and you must give yourself a break). Let your wife enjoy your child while you prepare to care for her.

There is a ton of information in the stickies, and I also learned most of what I've used by reading threads on this site. I have to admit to spending too much time on my ipad instead of getting on with things around the house, but that's how I learn. Here you get the unvarnished truth along with practical advice for managing things

Review your life insurance and health care. Do you have long term care? Has your wife been working? If so, SSDI and Medicare will become part of your life much earlier than you expected. There is only a 5 month wait with ALS (rather than 2 years). It's in the stickies. The ALS Association web site also has a lot of information like this (in addition to our stickies).

Mostly, spend time with your wife. Make memories. Take pictures for your child. Savor today. Nothing will change the prognosis, so grab every moment of joy that you can. Spending the day worrying will only waste the time you have.

Warm hugs,
Becky