Jeanau
Distinguished member
- Joined
- Jan 21, 2015
- Messages
- 341
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Pittsburgh
I know that this can be a delicate issue, but I also know that most of us here are realists and know the final outcome of having ALS. I'm not a rocket scientist but I am smart enough to realize that there are a lot of variables in the progress of our disease.
Because I had a lot of other physical conditions going on with gall bladder disease, we didn't even begin worrying about my lower limb symptons until October 20th of last year. I had my first EMG in November and was tentatively diagnosed with ALS by my neurologist. We were shocked. I had never even considered ALS. She then referred me to the specialist at the ALS Clinic for a second opinion. I met with the ALS specialist on December 31st. After he finished doing the EMG and going over my history, he told me that I definitely had ALS and most likely had had it for two to two and half years. Thinking back, it all began to make sense.
I've had a lot of progression (or regression depending on how you look at it) in the past three months with my walking and speech. I'm doing everything I can while I can, and am getting help from a PT, pulmonologist, my PCP, and the local ALS Society. My faith remains strong.
When I think about how long I might live, I've started to wonder if the date of diagnosis is the true date to consider...or should I consider the date of onset as a truer prediction of my life span?
Maybe none of the matters, but I want to be realistic with myself. Especially when so many decisions (a lot of them expensive ones) need to be made about what I might need in the future. I always find myself struggling with the question...will I even be around then...will the money hold out for care for me...is it worth remodeling the bathroom if I'm going to die in 6 months...and so on?
Am I the only one who thinks about these questions...or is it just one more thing about having ALS that we all understand and accept?
Thanks for listening!
Because I had a lot of other physical conditions going on with gall bladder disease, we didn't even begin worrying about my lower limb symptons until October 20th of last year. I had my first EMG in November and was tentatively diagnosed with ALS by my neurologist. We were shocked. I had never even considered ALS. She then referred me to the specialist at the ALS Clinic for a second opinion. I met with the ALS specialist on December 31st. After he finished doing the EMG and going over my history, he told me that I definitely had ALS and most likely had had it for two to two and half years. Thinking back, it all began to make sense.
I've had a lot of progression (or regression depending on how you look at it) in the past three months with my walking and speech. I'm doing everything I can while I can, and am getting help from a PT, pulmonologist, my PCP, and the local ALS Society. My faith remains strong.
When I think about how long I might live, I've started to wonder if the date of diagnosis is the true date to consider...or should I consider the date of onset as a truer prediction of my life span?
Maybe none of the matters, but I want to be realistic with myself. Especially when so many decisions (a lot of them expensive ones) need to be made about what I might need in the future. I always find myself struggling with the question...will I even be around then...will the money hold out for care for me...is it worth remodeling the bathroom if I'm going to die in 6 months...and so on?
Am I the only one who thinks about these questions...or is it just one more thing about having ALS that we all understand and accept?
Thanks for listening!