jellis86
Distinguished member
- Joined
- Jun 22, 2012
- Messages
- 256
- Reason
- PALS
- Diagnosis
- 02/2013
- Country
- US
- State
- WI
- City
- Eau Claire
I had to face it, I have ALS! I knew before the Dr told this past Feb. that I had it. After-all it was the only real explanation, but until he said, it's ALS, I held out a small flicker of hope that it could be something else, anything else.
But it wasn't to be, it was/is ALS and that's all there is to it. So what to do now?
I continued to work until I felt I was a burden on my co-workers...speech is 80% of our job. When co-workers and customers start asking what I said, I knew it was time to say, adios career. For some people giving up a job is like losing, well losing anything that they love.
But I knew it was time love it or not. So less than a full month after diagnosis I stopped working.
Two weeks after I stopped working my wife slipped on the ice and broke her back. For the next 4 weeks I became her caregiver....a role that she will surely be performing for me in the coming years!
This might sound crazy but it's kind of like a good thing she fractured her back. It left me with no choice but to step up and do things around the home, driving here and there, giving her meds, etc. It's not like I wouldn't have been doing stuff if she hadn't, but it made me take steps that I might not have taken as quickly.
Two months later, in mid May, I had a feeding tube placed just in case. I am so happy I did now as I take all my meds via tube. No more gagging on pills!
I have also been planning our trip out west, which is only a week away now! I have been keeping up with yard work and gardening. I pick up my Mother (85 and still active) and we go shopping or to garage sales on weekends.
My wife and I go out to eat often and my diet is only limited by consistency, more of a modified mechanical soft diet.
To wit I have kept as good an attitude as I can and I firmly believe it has a direct affect on this disease. Currently I can't say for sure if I have slow/moderate/ or fast progression. All I know is that while I am able to do things, I will. Once my abilities drop, then I will have no choice but to back off.
As of now the only other symptoms I have besides a weak tongue/eating and poor speech is a very slight weakness in my left thumb/forefinger. This comes and goes, I don't mean it gets 100% better, but my ability to use it changes from day to day. Some days good and some bad.
Oh yeah, and I'm still happy...happy to be alive, happy t do most things yet and thankful to God for everything!
Is this a rational thought process, attitude versus speed of progression? Or am I just lucky/disillusioned that 20 months after initial symptoms and 6 months after a 2nd opinion diagnosis I can still do most everything I did before, minus talking and eating certain foods?!
Joel
But it wasn't to be, it was/is ALS and that's all there is to it. So what to do now?
I continued to work until I felt I was a burden on my co-workers...speech is 80% of our job. When co-workers and customers start asking what I said, I knew it was time to say, adios career. For some people giving up a job is like losing, well losing anything that they love.
But I knew it was time love it or not. So less than a full month after diagnosis I stopped working.
Two weeks after I stopped working my wife slipped on the ice and broke her back. For the next 4 weeks I became her caregiver....a role that she will surely be performing for me in the coming years!
This might sound crazy but it's kind of like a good thing she fractured her back. It left me with no choice but to step up and do things around the home, driving here and there, giving her meds, etc. It's not like I wouldn't have been doing stuff if she hadn't, but it made me take steps that I might not have taken as quickly.
Two months later, in mid May, I had a feeding tube placed just in case. I am so happy I did now as I take all my meds via tube. No more gagging on pills!
I have also been planning our trip out west, which is only a week away now! I have been keeping up with yard work and gardening. I pick up my Mother (85 and still active) and we go shopping or to garage sales on weekends.
My wife and I go out to eat often and my diet is only limited by consistency, more of a modified mechanical soft diet.
To wit I have kept as good an attitude as I can and I firmly believe it has a direct affect on this disease. Currently I can't say for sure if I have slow/moderate/ or fast progression. All I know is that while I am able to do things, I will. Once my abilities drop, then I will have no choice but to back off.
As of now the only other symptoms I have besides a weak tongue/eating and poor speech is a very slight weakness in my left thumb/forefinger. This comes and goes, I don't mean it gets 100% better, but my ability to use it changes from day to day. Some days good and some bad.
Oh yeah, and I'm still happy...happy to be alive, happy t do most things yet and thankful to God for everything!
Is this a rational thought process, attitude versus speed of progression? Or am I just lucky/disillusioned that 20 months after initial symptoms and 6 months after a 2nd opinion diagnosis I can still do most everything I did before, minus talking and eating certain foods?!
Joel
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