BlueSeattle
Member
- Joined
- May 7, 2011
- Messages
- 17
- Reason
- CALS
- Country
- US
- State
- WA
- City
- Seattle area
Hi all, I don't post here much. Due to the extremely slow progression of my wife's ALS not much has changed in the last year... We bought an SUV for her as we were told as it progresses it is easier to fall out of a car than clime up out of one. We've been looking at hand controls for when she can't use the pedals anymore...
First, after 5 years from her first symptom she thinks it's finally spread from her leg as her shoulder is hurting. I was hoping she'd just tweaked it as she's still a very active person... Last night she said she thinks it's the ALS as she doesn't think all the muscles are still there...:sad: I wasn't expecting the arm... I guess I was assuming the left leg would be next... She's right handed... And hand controls for the car seem to be made to operate with the right hand... What do we do here? Buy a British car?
Second... Something that has been bothering me for a long time. The slow progression is obviously great for now but in the later stages of this disease not so much... I'm only 30 and obviously work full time. I need to work full time for things like benefits, and basic living. I have no savings and we had to short sale my condo (3 stories so stairs and ALS don't mix) so my credit isn't pretty. Doing the math and some Craigslist searching it it seems to pay for a caregiver 5days a week for 8 hours a day would cost a little over 30k a year or $2400 a month. I make a good sum of money and could afford that and rent plus bills. That really doesn't leave money for other things like food, clothing or other things I'm not thinking about that my wife will surely need...
I have enough in stock and can cover this for probably a year.. I could suck it up for another year, but at my wife's progression rate when the time comes I'm probably going to need it for many more... how do i do this... Also I typically work 50-60 hours a week (I have not figured this into my equation... And this is not because I'm a workaholic... It's that's just software...) and manage teams of software developers... So working from home is an occasional luxury but not something I can do all the time. Maybe once a week at most. I could leave the company and find a job that lets me work full time from home but then I'd lose the great benefits I have and probably get paid a lot less. This option is on the table but there are risks that I don't think I should be taking here...
First, after 5 years from her first symptom she thinks it's finally spread from her leg as her shoulder is hurting. I was hoping she'd just tweaked it as she's still a very active person... Last night she said she thinks it's the ALS as she doesn't think all the muscles are still there...:sad: I wasn't expecting the arm... I guess I was assuming the left leg would be next... She's right handed... And hand controls for the car seem to be made to operate with the right hand... What do we do here? Buy a British car?
Second... Something that has been bothering me for a long time. The slow progression is obviously great for now but in the later stages of this disease not so much... I'm only 30 and obviously work full time. I need to work full time for things like benefits, and basic living. I have no savings and we had to short sale my condo (3 stories so stairs and ALS don't mix) so my credit isn't pretty. Doing the math and some Craigslist searching it it seems to pay for a caregiver 5days a week for 8 hours a day would cost a little over 30k a year or $2400 a month. I make a good sum of money and could afford that and rent plus bills. That really doesn't leave money for other things like food, clothing or other things I'm not thinking about that my wife will surely need...
I have enough in stock and can cover this for probably a year.. I could suck it up for another year, but at my wife's progression rate when the time comes I'm probably going to need it for many more... how do i do this... Also I typically work 50-60 hours a week (I have not figured this into my equation... And this is not because I'm a workaholic... It's that's just software...) and manage teams of software developers... So working from home is an occasional luxury but not something I can do all the time. Maybe once a week at most. I could leave the company and find a job that lets me work full time from home but then I'd lose the great benefits I have and probably get paid a lot less. This option is on the table but there are risks that I don't think I should be taking here...