hello

[Neilc]

Hello to all.
Don't know where to start or what to say. My wife, 44 years old, has recently been diagnosed with ALS. I am trying to be strong but have waves of dispair that come over me. She is scared and depressed but is a very strong woman. Her main concern is her family.

Neil

 

[liz]

Neil -

My husband and I are in the same boat. Some days are better than others right now and I know he is very worried about me. I just joined this forum last week and am finding lots of encouragement and useful information. Keep checking in and start asking questions - there's some folks out there who seem to know an awful lot about what we are going through.

Liz

 

[Neilc]

Hello

Liz,

Thank you for your note.

It is hard for me but I know it is harder for my wife.

Neil

 

[Pearl]

Neil,
Does she have bulbar onset or limb?

I am what they call a CALS (caregiver /friend of an ALS patient) - my best friend's husband was diagnoised with bulbar onset in mid August. It was horriable for them at first (not that it's all that great now, but at least they can finally take a breath and relax a little) - at first they just sat and cried for weeks. It was bad. I say this only because, I think it will get better for you and your wife. The shock is horriable but slowly it will improve.

Your local ALS association will/should have tons of information for you. Every question you have in your head probably will be addressed by them and of course, you can ask questions here too.

I heard one person say - as PALS (people w/ALS) and CALS, we do our grieving in reverse - the worst comes first. Can't say I've known that first hand (as this is all new for my friends too) but that's what others say. Hang in there.

Pearl

 

[CindyM]

Hello Neilc. I am sorry to hear about your wife. The impact on both of you must be overwhelming at times. I am glad you found this site. The folks here are caring and knowlegable. My thoughts are with you both during these difficult times.

 

[Al]

Hi Neil. Welcome to the forum but sorry for the reason you have to be here. When first diagnosed it is like someone drove a stake through your heart. In time it will hurt less and you will find with your wife that life can carry on. It won't be the same but it will be what you make of it. Try to look at each new day as a gift and if you have any questions or concerns we are here to help. AL.

 

[liz]

Neil -

I'm not sure it is true that this is harder for your wife than for you. My husband feels the weight of the world on his shoulders right now because he 's not sure he's up to the task ahead.

Do you and your wife have any children?

Liz

 

[Neilc]

Liz,

Yes we have children and that is a major concern of my wife. A few years ago we became foster parents and when two of our foster children became legally free we adopted them. In total we have 5 children. Our oldest two, 23 & 21, are out of the house. Still at home is our 18 year old daughter and our newest additions 4 year old and 2 year old.

My wife has moments of when she holds the youngest and she just tears up.
They are a joy to our family and she feels that she is letting them down by being ill.

Neil

 

[liz]

Neil -

Our kids are 7, 11, 13, and 14.

We are struggling with just how much information to give them. They know I have neurological problems and will gradually become weaker, that I might have to use a wheelchair, etc. But we haven't gone into the mortality issue yet. Our thinking is that it is too much to digest at once and, since we don't know how rapidly things will progress, we didn't want to instill too much fear too soon. We'll keep telling them more as events dictate.

Like your wife, I feel very badly that I will be leaving my children so much sooner than one hopes. I feel badly about the stress this will cause them. And I feel badly that I won't know them when they are all grown up.

I'm really trying to focus on the present now and make the most of the time we have. The hustle and bustle of everyday routines with the kids actually helps me think about things other than ALS.

My 11 year old son has his 6th grade play this Friday and I can't wait to see him in it.

Liz