Six years in

[vltsra]

It's been six years since my husband was diagnosed with ALS. We are told he is LMN dominant so his progression has been slow. Because he worked with his hands he noticed difficulties right away and was diagnosed very quickly.

The first 3 years were not bad and I look at them as a blessing. We were able to do some wonderful things together including a trip to Greece, which he loved. I'm thankful that we had that time together.

His ALSFRS is in the single digits now. He is on bipap 24/7 and 100% tube fed. He is now largely bedridden. The bedsore is gone now (Jim, I can't thank you enough) but he is sleeping a lot (except at night when he awakens me to do various things). He just got a head controller for his power chair but at this point I'm not sure how much he will use it.

Trying to take one day at a time here. We have a caregiver so I'm still able to cycle and paint which keeps me going. It's hard watching him slowly get weaker.

V

 

[Jrzygrl]

Thinking of you, V! Sending big hugs 💕

 

[rmt]

I'm glad you had those 3 years that were not bad. And that the bedsore is gone. You are an amazing wife and caregiver. Sending good thoughts your way.

 

[Mary2]

You are an amazing wife! 6 years is a long time! Greece must have been wonderful! So glad you are painting and able to cycle. I admire you and everyone on the forum so much!

 

[affected]

I can't imagine how you must be feeling as you reach this 6 year mark.
One day at a time is definitely the way to go.
Onya Jim for helping with the pressure area, I love the breadth of support that can happen here.

 

[Lkaibel]

I know this is an old thread, but the part about the first three years caught my eye. Brian abd I had a pretty decent tone of it for a year and a half, than much progression. Six years I’d a long time indeed, and you sound like an awesome wife and caregiver.

 

[Narrowminded]

Those first years that are ok are a true blessing. I would guess we had about the same amount of time. Brian was trached and vented about 5.5 years in. It is very hard watching them the way they become. Thankfully, Brian didn't lose his voice until year 12, and retained movement in his thumb that helped him use his eye gaze. I'd say he lost that about 9mo prior to passing at year 14.

You are a wonderful wife and caregiver. I know you are a blessing to your husband. If you can, try and step into the spouse role as often as possible. I didn't realize I wasn't doing that, until it was too late.

Hugs,

 

[vltsra]

Lenore and Sue, thank you so much for the encouragement. It means a lot, especially coming from you both. We keep on going in spite of the difficulties.

V