Still wants to work

[ECpara]

I'm brand spanking new to this forum, it looks like a great place to be for such an awful diagnosis. My husband is in the process of being diagnosed with Bulbar Onset ALS, going to Duke in February for testing and confirmation. Needless to say it is all overwhelming and we have a zillion questions. He's not quite ready to hop on this forum yet but I am! Question - how realistic is it for him to continue working in his sales job?. He's had slurred speech for about 6 months now, gradually getting worse. How quickly can he get disability and how much does one get when they are on it? That 's my first question for now. Thanks for anyone's input!

 

[HelenL]

Hi ECpara, it really depends on how fast or slow your husband's progression seems to be... I'm still working nearly full time (self employed) nearly 2 years after my diagnosis, but I also don't have a job where I need to travel or be on the phone all the time, and I don't have bulbar onset. He'll know in his gut when it's time to leave, but many employers will also help accomodate his disabilities while he is working. I think that SSD takes 6 months from the filing, but I haven't filed yet myself... though I'll be needing to soon.

You'll find a lot of good information on this site, and get lots of different opinions. What each person ultimately decides to do for themselves is the right choice for them. I guess the best thing you can do for yourselves is to plan for the future, and live for today.

 

[momap53]

Check out Socialsecurity.gov for answers. You can fill out part of the paperwork online then take the required materials to your local SS office to complete the process. ALS DX has you on the fast track for benefits.

 

[Katie C]

First: find your local ALSA chapter and get in touch with them. They will have a local social worker that can help you with a lot of your questions. Things like disability timelines can vary from company to company and state to state.

Regarding working... does he still seem to be doing well at work? No complaints about performance? I'd say let him keep working if he wants to. On the other hand.. if you can afford for him to leave work to give you time to do those things together that you've always wanted to... do it!

 

[Larry48]

My daughter was diagonsed almost a year ago. She has slurred speech, but is still working and the company she works for is ok with it. She uses an iPad and iPod Touch to communicate at work.

 

[Susan10]

At my primary job, I worked for another 6 wks after my diagnosis; Ifinished the semester for my faculty position: and I will continue to work 20 hr/mo for a client for an undetermined length of time going forward. My primary job was fairly stressful, required being on the phone/computer for 8-12 hr/day (40-60 hr/wk) but I was paid for only about 24 hr/wk. and typing with one hand since June. I'm glad to be away from that! I agree that he will know when it's time to leave. A big part of my decision was wanting to use my time & energy on things for my family and not for the job.