Bujy
Active member
- Joined
- Sep 22, 2007
- Messages
- 34
- Reason
- Loved one DX
- Diagnosis
- Family
- Country
- CA
- State
- BC
- City
- Vancouver
My MIL has been diagnosed with ALS. I am absolutely devastated. When I was growing up, we had a family friend with ALS and it was super difficult. The rest of the family is supportive, but they are not really acknowledging it. My MIL's sister also had ALS, but passed away from cancer.
Both her and her sister had a slow moving form. I'm not sure what it's called. Apparently it's very rare. I'm trying to find some more info, but not sure what to look for.
So, we've had the diagnosis now for almost a year. I'm pretty sure she was showing symptoms for at least a year before that. She is now in a wheelchair and has no movement in her legs. She is losing use of her hands.. The dexterity is just not there. A hard time with picking up cutlery and smaller objects.
She is starting to lose total control of her arm on occasion. This is a new development and is not happening often at all. When she reaches for something the arm just falls down unexpectedly.
One of my biggest concerns if the disease is so slow acting, will it always be slow acting. Trying to think of how to say this with tears in my eyes. Umm.. when she's not able to swallow or breathe easily.. will she have to suffer for a very long time. It just really scares me. I almost wish it were a little faster acting so when she gets to the end of her fight, she isn't in that state for longer than she has to.
So many things going through our minds. So many questions.
How can I make things easier on her day to day life? She just sits around in her nightgown all day and rarely goes outside. Often the blinds dont even open. Taking OTC sleeping pills quite often. She has gotten on some antidepressents that seem to be working great. And I probably should be thankful that she has something that helps her sleep. But, it's getting worse.
Her husband is elderly and has a hard time taking care of her. Yet, they dont want anybody in the house helping too much. Bathing is getting hard for them. In and out of the chair or off the couch.
I should probably call the local ALS centre and find someone to talk to. I'm sure there's local support.. There's gotta be.
Thanks for listening all. Not sure if this is the appropriate place to vent. But, it's super hard and I'm not sure what to do.
Both her and her sister had a slow moving form. I'm not sure what it's called. Apparently it's very rare. I'm trying to find some more info, but not sure what to look for.
So, we've had the diagnosis now for almost a year. I'm pretty sure she was showing symptoms for at least a year before that. She is now in a wheelchair and has no movement in her legs. She is losing use of her hands.. The dexterity is just not there. A hard time with picking up cutlery and smaller objects.
She is starting to lose total control of her arm on occasion. This is a new development and is not happening often at all. When she reaches for something the arm just falls down unexpectedly.
One of my biggest concerns if the disease is so slow acting, will it always be slow acting. Trying to think of how to say this with tears in my eyes. Umm.. when she's not able to swallow or breathe easily.. will she have to suffer for a very long time. It just really scares me. I almost wish it were a little faster acting so when she gets to the end of her fight, she isn't in that state for longer than she has to.
So many things going through our minds. So many questions.
How can I make things easier on her day to day life? She just sits around in her nightgown all day and rarely goes outside. Often the blinds dont even open. Taking OTC sleeping pills quite often. She has gotten on some antidepressents that seem to be working great. And I probably should be thankful that she has something that helps her sleep. But, it's getting worse.
Her husband is elderly and has a hard time taking care of her. Yet, they dont want anybody in the house helping too much. Bathing is getting hard for them. In and out of the chair or off the couch.
I should probably call the local ALS centre and find someone to talk to. I'm sure there's local support.. There's gotta be.
Thanks for listening all. Not sure if this is the appropriate place to vent. But, it's super hard and I'm not sure what to do.