Old 02-15-2017, 11:18 PM #1 (permalink)
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Default Angie's thread

Hi all
New to forum board....Kinda new to accepting this crazy diagnosis..... still working, but REALLY starting to think it's getting the upper hand. Any suggestions?
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Old 02-16-2017, 06:32 PM #2 (permalink)
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Default Re: PALS roll call Wednesdays (or whenever)

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Originally Posted by Angiegal View Post
Hi all
New to forum board....Kinda new to accepting this crazy diagnosis..... still working, but REALLY starting to think it's getting the upper hand. Any suggestions?
Angie, welcome and just take it one day at a time!
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Old 02-17-2017, 12:49 AM #3 (permalink)
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Default Re: PALS roll call Wednesdays (or whenever)

Thanks. Doing the best I can...Would love to get to know more folks in this situation. I'm still working, although not sure for how much longer. Willing to listen to any and all stories.... If anyone needs a listener...
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Old 02-17-2017, 09:32 AM #4 (permalink)
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Default Re: Angie's thread

Hi Angie, My advice at this point is to stop working as soon as feasible. You have a limited span of time where you will be able to do things you enjoy. Do not waste that time at work. There are some difficult times coming up, but it is not all happening today. I have slow progression, 2 1/2 years post diagnosis I can still do most things myself. I tire easy and take pills through a g-tube, but I'm not falling apart quickly. I hope things go as well for you. You are still you, keep being you, one day at a time.
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Old 02-17-2017, 09:42 AM #5 (permalink)
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Default Re: Angie's thread

Angie,

Reading the stickies about what to do once you are diagnosed might help. I was still working when I got diagnosed (it took a year) and, after I stopped, it was like I still had a full-time job. As your needs increase, you will need to make decisions and some are not easy or cheap. Make sure your finances with your employer are spelled out (life insurance continuation, short- and long-term disability, severance pay, insurance for the interim when you are waiting for SSDI and Medicare to kick in, which is 5 months after you stop working, etc.)

Having a budget for what you want to get accomplished helps.

I suggest to every PALS to quit work and focus on living ASAP. I understand finances have to be considered in the decision but this disease, itself, is a job.
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Old 02-17-2017, 05:16 PM #6 (permalink)
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Default Re: Angie's thread

Thanks folks....
Must admit, here, if nowhere else that this is just incomprehensible.... I'm supposed to BE the one taking care of stuff, not worrying about being taken care of. It scares the HECK out of me (and makes me sad, and ANGRY!!)! I'm progressing (if that's the right word, declining would be more descriptive) slowly, which is good, 'cause it gives me time to figure out ways to compensate.... which I think is part of why I'm sooooo angry.... I can deal with the terminality of the diagnosis, it's the not knowing what to expect or when, that is driving me around the proverbial bend! Probably doesn't help that I'm trying to still be the "strong" one with my friends and family.
so, my Canadian PALS, especially those in Ontario...... apply for ODSP? OW? No benefits from my job, other than my bi-weekly pay...
Wanted to say thanks to Kim, but her acronyms confuse me... lol... SSDI? Medicare? Must be a south of the border thing, eh? I will take a look at the stickies you mentioned. Thanks again.
Truth be told, I'm scared to quit working..... Most days it's the reason I get out of bed.... If I quit this job, who would ever hire a general labourer (supervisor), who can't use her arms?? Heck, I can't even fathom what I would do all day....
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Old 02-17-2017, 06:13 PM #7 (permalink)
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Default Re: Angie's thread

Hi Angie
Welcome to the forum, I carried on working for a while. I loved my job so didn't want to give it up straight away. My employers were incredibly understanding and I switched to a flexible contract. I gradually reduced my hours and took unpaid leave to fit in holidays and trips as I wanted. When I stopped being able to drive for site work, they arranged for me to work from home on a consultancy basis.

I made the decision to stop totally when I felt I was making silly mistakes due to tiredness and possibly minor cognitive effects. My job was dealing with live traffic control so safety critical and I would never take risks. I am not saying stay at work or leave, I feel you should sit back and look at what would make you feel happier and more fulfilled. Once you have though about that negotiate if it's possible to get the work balance you want. I know a lot of companies aren't flexible and won't be as good as my employer but if you don't ask you will never know.

The main thing is to find the right balance, you don't want to look back and regret not making memories with your family. My husband is still working full time so me giving up work didn't give me any more time with him but it has given me lots of lovely time and memories with my daughters granddaughters and friends. People have asked me several times over the last year " what's on your bucket list" and my response is always people....
spending time with and doing things with the lovely people in my life, I wouldn't be able to do that if I was still working I would be too tired, that tiredness creeps up on you.

Sorry Angie this turned into a bit of an essay, the bottom line is only you can find the balance between work and memory making time don't feel you have to carry on at work because you have to or because you should.

Wendy x
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Old 02-17-2017, 06:26 PM #8 (permalink)
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Default Re: Angie's thread

Angie, welcome, fellow Canadian. Sorry to see you here, but know you're in the right place.

With regards to disability- you can apply for CPP Disability. It requires a fair amount of paperwork, but your doctor can help you out with it as well. I am in BC, so I'm not sure what the Ontario disability coverage is, but it is separate from the CPP disability payments. Apply for both!

If you attend an ALS clinic, there should be a social worker who can point you in the right direction with a whole variety of benefits, from applying for a Handicapped Parking card, right on up to applying for CPP Disability. There are many different things you can receive- random things like discounts on Canada Parks' passes to home modification grants.

If you don't attend a clinic with a social worker, your membership with the ALS society grants you access to counsellors and social workers who can help you.

If you have extended insurance through your job, look carefully through the plan to see if there are any benefits for disability. If your job brings you happiness and distraction, keep at it. There is a "duty to accommodate" law that makes sure you are able to continue employment, but need to alter your role or hours. There may even be a payout for medical or early retirement.

Lots to take in, but know there is lots of help here and with the ALS Society.

Best wishes
Fiona
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Old 02-17-2017, 08:10 PM #9 (permalink)
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Default Re: Angie's thread

If you go to the clinic at sunnybrook, they handled all the paperwork for me. As far as things go ODSP pays better than CPP. Make sure you apply for the disability tax credit. It is applicable to every year since symptoms started. In my case I got an extra 3 years of this write off. Also if you have to move to accommodate your needs you qualify for the first time home buyer's tax credit and expenses are deductible. Get in touch , if you haven't already, with the ALS Society. als.ca. In Ontario they oversee the client services, equipment and such. Do not buy equipment until you have checked with them to see if they have one. The Regional managers are a good resource as well. This is usually set up for you at the clinic. We are very fortunate to live in a place that has most expenses covered. That being said it still costs to have this disease,so any freebies are appreciated. The support group we have in Barrie is something ,I find helpful so check out the one in your area. Again, lots of difficult days are coming, But it isn't all happening today.
Vincent.
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Old 02-18-2017, 10:59 AM #10 (permalink)
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Default Re: Angie's thread

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Originally Posted by Angiegal View Post
Thanks folks....
Must admit, here, if nowhere else that this is just incomprehensible.... I'm supposed to BE the one taking care of stuff, not worrying about being taken care of. It scares the HECK out of me (and makes me sad, and ANGRY!!)! I'm progressing (if that's the right word, declining would be more descriptive) slowly, which is good, 'cause it gives me time to figure out ways to compensate.... which I think is part of why I'm sooooo angry.... I can deal with the terminality of the diagnosis, it's the not knowing what to expect or when, that is driving me around the proverbial bend! Probably doesn't help that I'm trying to still be the "strong" one with my friends and family.
so, my Canadian PALS, especially those in Ontario...... apply for ODSP? OW? No benefits from my job, other than my bi-weekly pay...
Wanted to say thanks to Kim, but her acronyms confuse me... lol... SSDI? Medicare? Must be a south of the border thing, eh? I will take a look at the stickies you mentioned. Thanks again.
Truth be told, I'm scared to quit working..... Most days it's the reason I get out of bed.... If I quit this job, who would ever hire a general labourer (supervisor), who can't use her arms?? Heck, I can't even fathom what I would do all day....
Sorry Angie. I didn't notice you were from Canada. Disregard the SSDI and Medicare statement.
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Old 02-18-2017, 09:54 PM #11 (permalink)
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Default Re: Angie's thread

Thanks Kim!
So, taking this weekend to re-think the work thing. Couple of issues Friday night, and I am not sure I want to keep working.... we'll see.

Anyone willing to tell their tale?

I had someone ask me about a bucket list..... Can't say I have one... well, 2 things. 1 was to learn the guitar.... guess that's out now that I have no use of my left arm, and to travel. That one's definitely going to stick in my craw.

Oh... I have a son, 23 soon... lives with his dad. Was diagnosed with PDD-NOS when we started him in school...
Trying to find a picture for my profile... I'm usually the one taking the pics, so no joy yet, but I WILL find one, evntually!!
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Old 02-28-2017, 12:31 AM #12 (permalink)
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Default Re: Angie's thread

So, had a major melt down this past weekend, over........ a bloody door lock!!!
I know.... I'm shaking my head now too..... Bit of a backstory, that door and lock HATE me.... Seriously. But, it was late, and my truck needed to be moved. Rather than fighting, I just gave up. Drove an hour back to my place (crying) because I just couldn't deal....
BUT, I'm feeling MUCH better now.... I Think...
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Old 03-13-2017, 12:11 AM #13 (permalink)
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Default Re: Angie's thread

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Hi all
New to forum board....Kinda new to accepting this crazy diagnosis..... still working, but REALLY starting to think it's getting the upper hand. Any suggestions?
Hi Ms Angie (again)

I did not realize you are as new as I am on here. Welcome.

I am still working part time. I love what I do, its the best job in the world but because of the progression its time to pack up and head to the barn. I do not want to bring any harm to anyone through a stupid mistake. I must continue to sell off my business equipment so that is not a burden to my family in the future. BUT! I keep thinking what if.. LOL I guess everyone thinks along the same line. My Neuro said he has me down for a new drug study in June or July as long as I am still somewhat mobile! So you can guess what is in my prayers every day! We are all here for you.

A
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Old 03-20-2017, 11:55 PM #14 (permalink)
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Default Re: Angie's thread

So, found pictures!!! Let's see if I can upload one.... maybe 2....
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Old 03-20-2017, 11:57 PM #15 (permalink)
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Default Re: Angie's thread

That was back at the end of August.....
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