NothingButLove
Distinguished member
- Joined
- Dec 25, 2016
- Messages
- 106
- Reason
- Lost a loved one
- Diagnosis
- 11/2016
- Country
- US
- State
- CA
- City
- Anaheim
My wife's neurologist first suggested ALS in early October. I've been a basket case for the past couple of months. I don't know if your brain just runs out of "sadness juice" or it develops calluses but very recently I could feel the "fog" starting to lift. I guess you just can't hurt that bad for that long.
I introduced myself on this forum on the "Newly Diagnosed" sub-board and received a very warm welcome. I noticed that many people had high post counts. Some post counts were in the thousands. I decided I wanted to be an active member of this forum and do what I could to help everyone out. So a couple of days before New Years, I marked all posts as read in the forum. From that point on, it was my intention to read every post and respond if I thought I could help.
The first post/thread I read was about a wife announcing her husband had had enough and decided to go off the ventilator. In a later post she announced he had passed away. The second post/thread I read was about a bitter husband with ALS causing additional stress to his wife/caregiver. I didn't read anymore threads. I didn't respond to any posts. I cried for about an hour. I told my wife why I was crying and we cried for a couple minutes more. This post is the first time I've been back to this forum since. I think it was just too early for me. The fog came rolling back quick.
I've realized that as sad as I've been, I'm in the "golden period" of this disease. My wife can still walk to the bathroom with a rollator. She can still use her arms, talk, eat and breath. The thought of what's coming is unbearable.
I'm 51 years old and I've had friends and acquaintances experience tragedy. One person's son died at 16 in a car accident. No goodbyes, no planning, no bucket list... You're just gone. Another friend's daughter died of leukemia. She was about 21 and had just graduated from Pepperdine. There was hope but her treatment failed. About a year ago, a close friend's mom developed cancer. She went through the treatments and was pronounced cancer free. A couple of months later the cancer came back, responded to nothing and she passed away. She was 45.
My wife is going to be 58 this Thursday. Obviously, I would take ALS over any of the situations listed above. That said, there's just something about ALS. It's the hopelessness. It's the slow, certain progression. But more than anything, it's the cruelty. The level of cruelty is off the charts.
Rob
I introduced myself on this forum on the "Newly Diagnosed" sub-board and received a very warm welcome. I noticed that many people had high post counts. Some post counts were in the thousands. I decided I wanted to be an active member of this forum and do what I could to help everyone out. So a couple of days before New Years, I marked all posts as read in the forum. From that point on, it was my intention to read every post and respond if I thought I could help.
The first post/thread I read was about a wife announcing her husband had had enough and decided to go off the ventilator. In a later post she announced he had passed away. The second post/thread I read was about a bitter husband with ALS causing additional stress to his wife/caregiver. I didn't read anymore threads. I didn't respond to any posts. I cried for about an hour. I told my wife why I was crying and we cried for a couple minutes more. This post is the first time I've been back to this forum since. I think it was just too early for me. The fog came rolling back quick.
I've realized that as sad as I've been, I'm in the "golden period" of this disease. My wife can still walk to the bathroom with a rollator. She can still use her arms, talk, eat and breath. The thought of what's coming is unbearable.
I'm 51 years old and I've had friends and acquaintances experience tragedy. One person's son died at 16 in a car accident. No goodbyes, no planning, no bucket list... You're just gone. Another friend's daughter died of leukemia. She was about 21 and had just graduated from Pepperdine. There was hope but her treatment failed. About a year ago, a close friend's mom developed cancer. She went through the treatments and was pronounced cancer free. A couple of months later the cancer came back, responded to nothing and she passed away. She was 45.
My wife is going to be 58 this Thursday. Obviously, I would take ALS over any of the situations listed above. That said, there's just something about ALS. It's the hopelessness. It's the slow, certain progression. But more than anything, it's the cruelty. The level of cruelty is off the charts.
Rob
Last edited: