Leave work - When?

[AustinMJ]

I'd like people's feedback on WHEN is the right time? I dont feel im ready yet and my symptoms are still mild (right hand/ twitching). Ideally, I'd like to draw a better income for my family as long as I can... but also want to LIVE a little. Thoughts appreciated. MJ

 

[trapped]

Do you have disability insurance?

I got trapped in a bit of a catch22. I wanted to keep working as long as I could but the amount of my disability insurance was based on my income. And my income was based on my work productivity. When my ALS had progressed to the point where it was starting to affect my productivity I had to retire or risk a reduction in my disability benefit.

Otherwise I would retire as soon as you can afford to do so.

I doubt that on your death bed you'll regret having spent too much time with your family.

 

[brooksea]

My husband worked for six months after his diagnosis. They asked him to leave or he would have stayed longer. They felt he was too much of a liability, as he was in sales and some of his duties were physically demanding and required him to be in people's homes and places of business. He was tiring out so easily, that in the end, that really was the right decision.

When he retired, we immediately went on a trip to NYC. We've since been to FLA numerous times and visited TX and LA. He's taken trips up north with his best friend and been to CA with his sister. Now, just making a trip to the corner to visit a neighbor is so exhausting for him (and he uses his PWC).

If you work for a great company or are self employed, then you might hang in there a little longer. But don't wait too long or you'll miss out on the things you could have done with family and friends.

 

[Bhappy]

Excellent advice from CJ.
I worked one whole school year with hands that became progressively more clumsy. 4 months before the end of that year I started limping when my left leg got a bit screwy. I still walk (without falling), but those last two months at school were exhausting. For me, the time when 3 limbs were affected became the time to say adios to work. Now I get around best with my Rollator walker.

I too visited NYC and relatives in Canada. It's off to AZ in November!

Good luck making the decision.

 

[KC2U2]

It depends on several factors I worked alone in a retail store and stayed for three months. I did not have insurance so I made the move to get the Medicare and SSDI started as quickly as possible, and it still took seven months from last day of work to first check.

 

[Polar]

I worked construction (Electrical) I packed it in when I started tripping over nothing and could not carry the tool box very far and was having serious problems with stairs and ladders.. Plus I was relying on others to much.
Bottom line I had become a danger to all that worked around me.. Added to that when the cold weather moved in the problems got 5 X worse.

 

[Bhappy]

Another thought I forgot since it's summer! Polar is so right about 5x worse in the cold weather!

 

[Artisto]

I stopped working 2 months after my diagnosis. As a Registered Nurse, my ALS symptoms affected my hand writing and speech which made it difficult, by the end of the day I was totally exhausted. I have disability insurance which helped with the transition until MCR began. Unfortunately, my disability was only 60% of my income. I don't regret my decision of stopping work when I did. I wanted to spend more quality time with my wife and children as long as I could.

 

[KissJ]

This is so individual. There are many factors to consider. My husband recently took 20 vacation days owed him, then applied and is now on short term disability, then he will reapply for long term disability. It is all a process for him. He tried to work but he was exhausted, he had to travel and it was very difficult. So, then he was able to work at home on the computer and conference calling, and individual calls which is much of his job anyway. Writing got more difficult, more symptoms developed and he knew he had to stop working after a second opinion. The stress was hard on the ALS too...something to consider. Last but not least, it all takes time to apply for this, that, and all so don't leave it go. You will know when the time is right with all considered. God Bless you!

 

[arwaxru]

It certainly is very personal and each situation is very different. I started with right hand clumsiness months before I sought a diagnosis. Fortunately, I have always been a bit ambidexterous (or ambisinister) and was able to continue without much problem for a while. At this point, I continue to work with modifications to my role, the help of DragonSpeak, and a wonderfully supportive boss. My income has no yet been affected. If my productivity drops, and a pay cut is proposed, I will stop. My disability income is linked to my salary and don't want to put that at risk. Fortunately, I am progressing slowly. Because I am able to work, I can restructure my finance/retirement planning. This is a blessing.

 

[Katie C]

Glen worked for about 6 months after his diagnosis... primarily so he would have been with the company long enough to be vested in their retirement program. It didn't make that much difference for him specifically, but the company now pays me a small pension and I have health care under their group program. I have some health issues that would have made it hard to find insurance on my own. We found being honest with his boss about what was going on, and monitoring how stressful work was becoming (including transportation to and from after he could no longer drive) were all part of the equation.

 

[Will]

My PALS retired upon diagnosis. He was an RN in a stressful position. He did have STDis and LTDis, and got both as well as SSDis. We have traveled to the places he wanted to go, and is doing what he wants to do. If working is what gives you the most satisfaction in life, by all means, continue to when you can not; but this dreadful diagnosis may make you re-think everything.

 

[Sequoia]

Austin, keep in mind that now is also the time you could be spending with you family doing stuff you might not ber able to do with latter. I started with a footdrop, but with a brace I could walk normal. I love to hike, so I started making walking memories, with photos and videos of my favorite trails like Mt Rainier, Mt Hood, the cascades. Now I can not walk more than a block. Bit I have a scooter and I still get out on trails that are fairly even. Most of all, learn to stay in the moment and really live life to the fullest. Blessings on you and your family

 

[notme]

It is a personal choice. For me, in the work I do, it's nearly impossible as I have so many affected areas--and the more I try to work, the more exhausted I become.

Personally, I have no choice--I need the money--but given my choice, I'd rather be enjoying my time while I can still be out and about.

Ya gotta do what you gotta do. Make those memories while you're able to make them. They will be a comfort to those that love you down the road.

I'd be looking into SSDI earlier rather than later, too. It takes 5 months off work to be approved for it.

 

[Chris_b]

I worked as a coachbuilder till May this year but had greatly reduced my duties to a point were i was just going in and hanging about! If i had a job less hands on, no drilling, welding, griding, using heavy machines and climbing ladders etc i may have carried on. Its definatley a personal choice and in my opinion not to be taken lightly.
I dont half miss the laughs with lads