disability question

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Distinguished member
Dec 10, 2007
i've been dealing with this for almost three years. i'm still working, and still bicycling to work, but my left hand is mostly useless and now my right is atrophying too. i have short- and long-term disability and insurance. my ability to do my work has been impacted. i don't want to lose my job, and my disability coverage, by trying to stick with it beyond my ability. can anybody offer advice or relate experiences?
Maybe we need a few more details...what do you do for a living? Some jobs can be moldified to compensate for hand weakness, but we would need to know the nature of your work.

Also, it is good news that you can bicycle to work. A lot of folks would not have the leg strength nor the hand/arm strenght to manage either steering or pedaling.
i'm a software developer, or have been a software developer, but this disease is making it tough to use the keyboard. everybody suggests voice recognition, but i have doubts about that working well for software development. the tech guy at the als clinic suggested a usb morse code input device. sounds kinda crazy, but interesting and i'll try it. i used to be able to key as fast as i could think, now i'm reduced to hunt and peck with plenty of typos. all my life i've gotten "outstanding" reviews, suddenly i'm being reprimanded for bad attitude. heck yeah i don't have the same attitude. i can still work, but for how long? how can i keep up with the latest developments in my field? if i lose my job, or have to take a pay cut, will that negatively impact my disability when i need it?

i am grateful that i can still bike. its nt been without challenges. i gave up my car seven years ago and have been biking to work, shopping and doing ultra-marathon bike rides since. because of my hands, i've switched to a recumbent bike, and more recently had it modified so all the hand controls are on the right. now my right hand is getting weak. i may have to switch to gear-less and find a way to rig up a foot brake. sure, i could go back to a car--i still have a diver's license--but there's something horribly wrong with a system that says, you're physically compromised, so you should switch to a 2000lb steel vehicle of death & mahem.

anyway...i've worked since i was a teenager...what i really want to know is: when should i go on disability? if i wait until i've been demoted or fired, will i have lost or diminished my benefits?
I see the problem. voice recognition software only works with the common Microsoft programs. I am not even sure it will work with Excel. The morse code thing sounds promising, though.

Not sure about the disability question. We keep saying we are going to start a section on this issue. Let's hope others have some input.
You got lucky I'm here

I never look in here, too depressing.....

Anyway, I just did all that. Do you have a diagnosis by a major institution ?

Also, read every line of your STD and LTD manuals from work, mine clearly stated that if I got fired I could not be denied my benefits once I had begun the process. Also, does your work know...once they do, they have to be careful of ADA.

ALS is not one of those things you can fake, once you have a major institution doctor say that you can't work, it's over as far as STD and LTD is concerned.

Here's why I asked about work....when you go on STD, you also file for FMLA, they won't dare mess with you.

If you come back to this thread I'll answer whatever you have.
Hi Ahands,

I took a new job as an administrator and had a lot of trouble with what I thought was arthritis. The job was cut for other reasons but I kept my level i.e. money and benefits for the next school year. I was DX with ALS on Oct 31 2006 and the union people had me go right out on LTD. So even though I officially retired in March 07, I will get LTD payments until full retirement age at 65. In addition as I fight to get on SSD, the lawyer is paid by LTD as they want me on SSD. However, my retirement pension (36 years) and SSD will equal more than 60% of my previous pay so LTD will stop paying except they continue to pay 100 dollars a month as per their minimum. I am telling you this so you can get your union or personnel department helping you get all the benefits you are entitled to. If you wait until you are let go or just quit then you could really miss out on some real financial help. If you have a final DX of ALS (I don’t) then you are automatically on the express route to SSD, assuming you are a contributor. You will need to plug into the TERI law, which is explained on the SSD website - put in a search for it at the site.

Please note Dragon NaturallySpeaking Preferred or Professional voice recognition, works on Excell, as well as every program I have tried except one writing program I used for kids. I don't know enough about your job to say if it would work, but I did use it with general program like making a simple computer game.

Best Wishes, Peg
I think I'm not yet formally diagnosed. 1st neuro thinks I have ALS. 2nd neuro said its progressing too slowly. 3rd (ALS specialist) agreed that it was slow for ALS. Then I stopped going to neuros for awhile, as I'm not eager to be diagnosed if there's no treatment anyway. I was pretty stable, but recently, atrophy sped up. I went to a 4th neuro (also an ALS specialist) and he put me on Rilutek and ordered blood, cat scan, another EMG--waiting on those results. I went back to the 1st and got a lumbar puncture (all normal).

if I got fired I could not be denied my benefits once I had begun the process.

I don't understand...what process? Is there a process I can begin and still keep working? I'd rather keep working, but sure don't want to screw my benefits up by doing so. There's plenty of volunteer stuff I'd like to do if I'm not working.

Is this something the MDA will help me with?
You will need to plug into the TERI law, which is explained on the SSD website - put in a search for it at the site.
Please note Dragon NaturallySpeaking Preferred or Professional voice recognition


I haven't found much on "TERI Law" yet...

I use Linux and, unfortunately DragonSpeak isn't available for Linux. IBM ViaVoice used to be, but not anymore. I tried an old version of DS on Linux with Wine, and it mostly worked, but not 100%.
You have to sort-of make up your mind

If you are getting bad reviews at work due your disability, it is time to become VERY familiar with your manuals (STD and LTD).

Also, the more you prove that you can still work, the more the LTD (and for sure Social Sec )people will take note.

IF you have ALS this decision will be forced upon you, be prepared...know your company benefits and your rights and know them well. No company WANTS to pay you LTD till you die. STD is a no-brainer because there IS an end for the company.

If you become motivated, I'll be around.
I agree with the opinion about becoming very familiar with your benefits package but I have seen on several occasions companies take advantage of and get rid of people with poor job performance due to health problems.

One guy I knew had a kidney transplant. He was out of work for several months. The company convinced him to come back part time then they held a layoff and he was gone.

Another guy with depression issues 'blew up' at someone at work, police took him to a mental wing at the local hospital. They fired him for the 'aggresive' behavoir.

Yet another friend of mine with depression due to peripheral neuropathy, left work several times on leave. He would return to work before he was ready then had poor performance which his boss regularly documented. They fired him and left him without a way to get STD or LTD benefits.

The moral of this story is... You need to assume that no one cares about your problems other than yourself. Get your HR department involved, cite your difficulties and ask for assistance.

I have been lucky. My HR people made our landlord put in a ramp by the front door. (I was using the loading dock.) My company made our insurance supplier add Rilutek to our prescription plan.

I also had my ALS clinic doctor fill out the paperwork for me to leave work. We turned that in to my STD/LTD plan so that there is no question about it when I decide to stop working.

I agree with all of the above

And that is what I meant also. Once you tell your HR people, they have to be careful NOT to discriminate, they can't fire you because you have a problem.
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