- Joined
- May 9, 2016
- Messages
- 1,530
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
In a very odd coincidence, a casual friend of mine is also a CALS. Her then fiance was diagnosed with ALS is November of 2013 after a 9 month long diagnostic process. Given a lot of his symptoms and that he is a vet and over 50 white male (higher risk groups all around per our Dr anyway) I am unsure why the Dx took so long, but so it was. His presenting symptom was dramatic and bilateral, he just could not raise his arms past his shoulders one morning.
The saddest thing was that they had both really just found love. They had just moved in together, had been together less than a year. so that was all supplanted by the diagnostic process first and then the Dx, of course. She felt like I did though, that it was almost a relief to finally just HEAR it, not wait anymore.
She left her job in pretty short order, as did he. They were blessed to be able to spend time in Florida two winters in a row, and go on cruises, and have some fun. Her husband's physical decline has been a little different. He has had no meaningful use of arms or legs for some time. The power wheelchair and van and all of that come into the picture pretty early. He could pivot transfer though until just very recently, so that was a blessing. What is interesting is that he has been able to eat and talk, no peg. His lungs have sustained him, though have steadily declined and he refused a trilogy from the start. He has had a crazy ride with bowel issues from the start.
My friend has been a total trooper through some very heavy duty caregiving. They married about six months after his Dx, and she has been amazing.
Well BANG, last week the Doctor announced that her husband is "actively" dying. She is not even sure at this point what all is failing, but it's multiple systems and he is on his way out. In and out of the hospital and home, trying to get comfortable. I feel so bad for her, it really brought this disease home to me. Brian will not be in that shape because he has made his choices VERY clear to me and remains steadfast so far in those choices. It just reminded me that yup, this is fatal indeed and may be so when it is least expected.
The saddest thing was that they had both really just found love. They had just moved in together, had been together less than a year. so that was all supplanted by the diagnostic process first and then the Dx, of course. She felt like I did though, that it was almost a relief to finally just HEAR it, not wait anymore.
She left her job in pretty short order, as did he. They were blessed to be able to spend time in Florida two winters in a row, and go on cruises, and have some fun. Her husband's physical decline has been a little different. He has had no meaningful use of arms or legs for some time. The power wheelchair and van and all of that come into the picture pretty early. He could pivot transfer though until just very recently, so that was a blessing. What is interesting is that he has been able to eat and talk, no peg. His lungs have sustained him, though have steadily declined and he refused a trilogy from the start. He has had a crazy ride with bowel issues from the start.
My friend has been a total trooper through some very heavy duty caregiving. They married about six months after his Dx, and she has been amazing.
Well BANG, last week the Doctor announced that her husband is "actively" dying. She is not even sure at this point what all is failing, but it's multiple systems and he is on his way out. In and out of the hospital and home, trying to get comfortable. I feel so bad for her, it really brought this disease home to me. Brian will not be in that shape because he has made his choices VERY clear to me and remains steadfast so far in those choices. It just reminded me that yup, this is fatal indeed and may be so when it is least expected.
