Old 07-06-2016, 08:06 AM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2016
City: Brooklyn
State: NY
Country: US
Diagnosed: 11/2015
Interest: I have been diagnosed with ALS.
Posts: 1
brita is on a distinguished road
brita brita is offline
New Member (Say Hi)
Join Date: 2016
City: Brooklyn
State: NY
Country: US
Diagnosed: 11/2015
Interest: I have been diagnosed with ALS.
Posts: 1
brita is on a distinguished road
Default When did you decide to stop working?

Hi everyone

This is my first time posting. My name is Brita I am 29 and was diagnosed with ALS in Nov 2015. It’s been hard to come to terms with but thankfully everyone around me is very supportive. The biggest issue I am struggling with lately is if I should/how much longer should I continue working.

When I was diagnosed I was living and working in NYC. I did tell my managers and they were supportive of my decision to move to my parents in Miami and I moved to South Florida in Feb. I am fortunate to have a job that involves desk work, lots of emails, phone calls etc. I work for a retail company, so instead of working in a large office, they’ve allowed me to work from a store. This has been fine until recently, I am finding the act of getting to work is absolutely exhausting. Fighting traffic, taking my computer bag in, the quarter mile walk from the handicapped spot I park in to the store. All the small things that used to just be annoying are now exhausting! My HR person is very helpful and informative and I am thinking my next step is to apply for FMLA intermittent leave. I don’t want to quit just yet, I love my job and my company so I want to work as long as possible. Plus I have a lot of student loan debt, private and public, and it’s a heavy burden to think about.

So my real question is at what point did you decide to stop working? What sort of “reasonable accommodations” did you go through before coming to that decision? How did you handle the prospect of paying back debt if you did quit?
brita is offline  
Old 07-06-2016, 10:14 AM #2 (permalink)
Margesmn's Avatar
New Member
 
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 11/2015
Interest: I have been diagnosed with ALS.
Posts: 66
Margesmn is on a very distinguished road
Margesmn Margesmn is offline
New Member
Margesmn's Avatar
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 11/2015
Interest: I have been diagnosed with ALS.
Posts: 66
Margesmn is on a very distinguished road
Default Re: When did you decide to stop working?

Welcome Brita. I'm sorry you've joined us, but I hope you will find everyone here to be as supportive and helpful as I have.
I was diagnosed in November 2015 also. I quit work in February. I too reached the same point you are at where getting up and getting to work was exhausting. I was fortunate to be able to work from home and as I was able. Is this a possibility for you? I just reached a point where I wanted to be able to spend my time doing what I wanted to do and not working. My job was also stressful and that was a big factor in quitting too. It's not an easy decision. I am married and my husband works so that made the financial decision easier for me. I'm not sure how student loans would be if you are not working. You will qualify for Social Security Disablilty which will kick in 5 months after you quit working. (You can apply the day after your last day of work.) Does your employer offer any short term disability?

Ask lots of questions here and of your doctors and your local ALS chapter.
Wishing you peace in the days ahead.
Margaret
Margesmn is offline  
The Following 2 Users Say Thank You to Margesmn For This Useful Post:
bobgus (07-19-2016), brita (07-13-2016)
Old 07-06-2016, 10:34 AM #3 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,059
GregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of light
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,059
GregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of light
Default Re: When did you decide to stop working?

Regarding paying back debt, many life insurance policies have something called accelerated death benefit which can give you a large, tax-free hunk of cash.

http://www.aetna.com/individuals-fam...fact-sheet.pdf
GregK is offline  
Thanks from
brita (07-13-2016)
Old 07-06-2016, 01:04 PM #4 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 509
Vincent has a spectacular aura aboutVincent has a spectacular aura aboutVincent has a spectacular aura about
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 509
Vincent has a spectacular aura aboutVincent has a spectacular aura aboutVincent has a spectacular aura about
Default Re: When did you decide to stop working?

My decision came down to work/life balance. When I reached the point where I could work but slept the evening away not having time for family, I went on disability. It was a simple decision, choosing family over work. We have a limited amount of time. Invest it wisely.
Vincent
Vincent is offline  
The Following 3 Users Say Thank You to Vincent For This Useful Post:
BlueTrain (07-06-2016), brita (07-13-2016), KimT (07-06-2016)
Old 07-06-2016, 02:20 PM #5 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: When did you decide to stop working?

I was officially dx in August 2015. We were just starting a new semester (I was a college professor with close to 26 years with the same public college.) Unfortunately, my immediate supervisor retired a few months before my dx. The new boss, an attorney, was not very accommodating. My first move was to get approved under ADA to work 100% from home. I had a solid case because I had developed and oversaw a program that was 100% online and I had a home office with everything I needed. They went back and forth for a week or two and then approved me for one semester. Same time they started requiring me to do huge amounts of administrative work (I had been a Department Chair before so they knew I could do it.) They claimed it was to make up for my not serving on committees but the amount of work in itself was a full-time job. So I went out on FMLA and bought myself 12 weeks. I had enough sick time to carry me until March and the 12 weeks would get me to the end of the semester, then I had three weeks off for Christmas. During the first few weeks off I knew I could never go back. There was too much else to take care of and my best friend just had a pacemaker implanted, my 79-year old brother was here for the Winter (his condo is 300 steps from mine.) Both of them needed help and I was it. So I went to HR and pleaded my case. The HR Director agreed to let me stay on the payroll until my sick leave ran out. That was a blessing because they paid 100% of my medical and it didn't run out until Medicare kicked in. As soon as my short-term disability (sick leave) ran out, my long-term disability kicked in. I had to fight more for that than anything else and they are still trying to reduce it to the minimum because they say my pension (which I converted into a payout IRA) COULD have been taken monthly.


Here are some things I've learned:

No matter how much of a star you are at work, cover your butt.

Use FMLA to protect yourself and make sure you follow up on any forms your doctor sends in.

Once you have stopped working, apply for SSDI immediately (read sticky.) Get your doctor to write a cover letter with your diagnosis. I was approved within 2 weeks and Medicare started five months from the last day I worked (month following.) You can go online to see how much your SSDI benefit will be. My estimate was within $50 of what their site said. That will start the month after Medicare starts because they pay one month in arrears.

If you have a work long-term disability plan, make sure you get your doctors to fill out their portion correctly. Same with any life insurance demand for accelerated benefits.

Your Federal students loans will be forgiven BUT you will have to pay taxes on the amount forgiven. IRS debts cannot be discharged in bankruptcy nor can student loans. What CAN happen is they have hardship "settlements." I've gotten these for clients in the past (I'm a CPA.) But you do need to consider your finances.

Keep any funds that you now have in your 401k or IRA in those funds for protection against creditors.

The bottom line is weighing the pros and cons as relates to your quality of life. You can't beg or buy one day back. I thought I would miss my job, the students, my colleagues. Aside from a few colleagues who keep in touch, I regret working all those Summers when I could have been doing things I liked better.
KimT is offline  
The Following 3 Users Say Thank You to KimT For This Useful Post:
BlueTrain (07-06-2016), brita (07-13-2016), Margesmn (07-25-2016)
Old 07-06-2016, 06:44 PM #6 (permalink)
Member
 
Join Date: 2014
City: Deep in the Heart of
State: TEXAS
Country: Uni
Diagnosed: 08/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 121
Suzannah is on a distinguished road
Suzannah Suzannah is offline
Member
Join Date: 2014
City: Deep in the Heart of
State: TEXAS
Country: Uni
Diagnosed: 08/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 121
Suzannah is on a distinguished road
Default Re: When did you decide to stop working?

Hi Brita,

I'm so sorry to hear of your diagnosis. I don't have much to add about leaving work, but I wanted to add some info to Kim's comment about discharging student loans.

A good resource for information about discharging federal loans because of disability can be found here, if you haven't seen it: https://www.disabilitydischarge.com/

--Suzannah
Suzannah is offline  
Thanks from
brita (07-13-2016)
Old 07-06-2016, 09:18 PM #7 (permalink)
BlueTrain's Avatar
New Member
 
Join Date: 2015
City: LC
State: Maritimes
Country: CA
Diagnosed: 01/2016
Interest: I have been diagnosed with ALS.
Posts: 25
BlueTrain is on a distinguished road
BlueTrain BlueTrain is offline
New Member
BlueTrain's Avatar
Join Date: 2015
City: LC
State: Maritimes
Country: CA
Diagnosed: 01/2016
Interest: I have been diagnosed with ALS.
Posts: 25
BlueTrain is on a distinguished road
Default Re: When did you decide to stop working?

Hi Brita,

So very sorry to welcome you here. I am 31 years old, diagnosed this January, but my symptoms began when I was 29. I had a fairly rapid UMN onset beginning in the fall of 2014 which really affected my ability to walk. By February, 2015, I realized that it was just too dangerous to walk from my car to my office, especially in the ice and snow. (I’m from up North.)

I’m a corporate/tax lawyer, and luckily, my employer has been very accommodating by allowing me to work from home. I was (and still am) able to work on transactions, participate in conference calls, and carry on my practice with the help of my wonderful paralegal and the other lawyers at my firm. In some cases, I even meet with clients in my makeshift home office, which is nice. That being said, continuing to work hasn’t been easy. I have a lot of pain which at times makes it very difficult to concentrate. Plus, you know, the whole terminal illness thing is also a bit of a distraction.

Your question is a really good one. In my case, I will probably stop working when I am no longer able to effectively service my clients, and to be honest, I think that time is fast approaching. My job has always been stressful, and before getting sick, I had to be on top of my game in order to perform at work, i.e. meet deadlines, manage clients, close deals, etc. Right now I feel like I’m taking a Toyota Corolla to a Formula 1 race, if that makes sense. I just don’t have the same passion, drive and focus that I did when I was healthy, which makes things difficult. Plus, as was noted by some of the other members, work kind of gets in the way of being able to enjoy the time I have left. For example, I’ve realized that negotiating and drafting a shareholders’ agreement isn’t all that important in the grand scheme of things, and is probably not a valuable use of my limited time. It’s a difficult decision, particularly if you’re a workaholic (as I am) and enjoy your work (as I do), but I think you’ll instinctively know when it’s time to hang up your hat.

Best of luck with this,
Thomas
BlueTrain is offline  
The Following 2 Users Say Thank You to BlueTrain For This Useful Post:
affected (07-06-2016), soonerwife (07-07-2016)
Old 07-16-2016, 02:04 AM #8 (permalink)
sleepy's Avatar
Member
 
Join Date: 2015
City: Armidale
State: NSW
Country: AUS
Diagnosed: 01/2016
Interest: I have been diagnosed with ALS.
Posts: 109
sleepy is on a very distinguished roadsleepy is on a very distinguished road
sleepy sleepy is offline
Member
sleepy's Avatar
Join Date: 2015
City: Armidale
State: NSW
Country: AUS
Diagnosed: 01/2016
Interest: I have been diagnosed with ALS.
Posts: 109
sleepy is on a very distinguished roadsleepy is on a very distinguished road
Default Re: When did you decide to stop working?

I agree with what Vincent and others already said. I was the primary income and felt like I should keep working and my work was supportive with reduced hours and different duties. Parents thought I'd miss mental stimulation and social contact. I stopped in May and never regretted it. Time is short. Knew I'd never wish that I'd spent longer at work. Took three weeks of day sleeps before one day waking up not exhausted. I love spending early retirement with husband and kids!
sleepy is offline  
Old 07-24-2016, 01:40 PM #9 (permalink)
dkcarl62's Avatar
Member
 
Join Date: 2014
City: Novi
State: mi
Country: US
Diagnosed: 03/2015
Interest: I have been diagnosed with ALS.
Posts: 201
dkcarl62 is on a distinguished road
dkcarl62 dkcarl62 is offline
Member
dkcarl62's Avatar
Join Date: 2014
City: Novi
State: mi
Country: US
Diagnosed: 03/2015
Interest: I have been diagnosed with ALS.
Posts: 201
dkcarl62 is on a distinguished road
Default Re: When did you decide to stop working?

I was standing at the copy machine one day, and as I was turning to leave with my copies, I fell over backward. Like a tree falling. My head bounced twice when it hit the floor and co-workers said it sounded like a bowling ball. It was a miracle I wasn’t seriously injured.

Co-workers assisted me in getting on my feet and I was taken to urgent care by an HR employee.

I had some tests done, and an x-ray and was send home to rest. I missed about 8 work days before the doctor deemed me well enough to return to work. When I got back, I was informed that there would be no workers comp claim filed for my event, as the company was not at fault for my injury. The cost of my medical care was funneled thru my health insurance coverage, and the time lost from work was deducted from my vacation bank.

That is when I filed the paperwork for disability.

Deb
dkcarl62 is offline  
Old 07-24-2016, 02:51 PM #10 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,059
GregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of light
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,059
GregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of lightGregK is a glorious beacon of light
Default Re: When did you decide to stop working?

Deb, that was a bullshit move by your old company.
I think a lawyer might've had a different opinion.
GregK is offline  
Old 07-24-2016, 06:08 PM #11 (permalink)
dkcarl62's Avatar
Member
 
Join Date: 2014
City: Novi
State: mi
Country: US
Diagnosed: 03/2015
Interest: I have been diagnosed with ALS.
Posts: 201
dkcarl62 is on a distinguished road
dkcarl62 dkcarl62 is offline
Member
dkcarl62's Avatar
Join Date: 2014
City: Novi
State: mi
Country: US
Diagnosed: 03/2015
Interest: I have been diagnosed with ALS.
Posts: 201
dkcarl62 is on a distinguished road
Default Re: When did you decide to stop working?

I contacted a lawyer, Greg. He told me they were absolutely wrong to do what they did. He also said I won't be able to find a lawyer to touch the case. Not enough money. I think the company wanted to get rid of me. They couldn't have someone who falls down around - too much liability that I could have seriously hurt myself. When I did come back after the accident, they insisted that I use a walker inside the building. Which was ludicrous - how could a walker have prevented me from falling backward?

Deb
dkcarl62 is offline  
Old 07-24-2016, 06:23 PM #12 (permalink)
Very Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
KimT KimT is offline
Very Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 1,389
KimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to beholdKimT is a splendid one to behold
Default Re: When did you decide to stop working?

Plus, getting a lawyer and going to court or even arbitration is exhausting. I would have done the same thing.
KimT is offline  
Closed Thread

Tags
als, back, diagnosed, helpful, love, stop working, work


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
working still? tinyandme Current Caregivers (CALS) 9 04-07-2014 08:51 AM
Working to breath zoohouse People With ALS - "PALS" 12 10-31-2013 12:04 PM
Got My Mojo Working! Uptown People With ALS - "PALS" 10 12-30-2012 02:52 PM
Working while caregiving ksspeicher Current Caregivers (CALS) 14 04-15-2012 12:23 PM
Working Out Bad Balance General Discussion About PLS 29 07-15-2011 03:44 AM
Working out? Trapped in myself General Discussion About PLS 27 08-18-2010 04:53 AM
When to decide PEG isn't working? brooksea People With ALS - "PALS" 50 05-31-2010 12:51 AM
Questions for those who had to stop working Elizabeth555 Current Caregivers (CALS) 8 04-05-2010 08:48 PM
Help! How to decide what mattress is best? Palmbeach Current Caregivers (CALS) 12 03-05-2010 07:29 AM
I just can't decide? jimO General Discussion About ALS/MND 10 09-07-2006 01:09 PM


All times are GMT -5. The time now is 12:44 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016