New to forum

[SanNicolas]

Hello,

My fiancee got diagnosed in April, it all started with muscle twitches on the arms and in January of this year she started to notice weakness on her right arm. Since the diagnosis her breathing and swallowing have become more difficult.

I am an engineer, and I'm having problems at work, mainly because I can't really concentrate on my tasks. I will start therapy next week (since everybody on this country, even psychiatrists, are on holiday). I feel that at some point it will be impossible for me to sit 8 hours in my office, have any of you been in a situation like this?

Thank you,

R.

 

[MaxEidswick]

>sorry to meet you here but welcome!




Max - Friday, July 24, 2015 7:29:36 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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[Atsugi]

R, I'm sorry to read about your fiancee. What a terrible circumstance.

My country has a law that allows people to take days off in case of family trauma. I also found that medication helped me get through it. Perhaps your doctor can help.

 

[affected]

R - you may want to go to the general discussion section and read the anticipatory planning sticky at the top.

Your fiance will become totally dependant - do you live together now? Are you able to take the time off work to look after her yourself or will you hire caregivers?

If you are hiring staff you may still find you will sleep less and less as her night needs increase, and the grief and worry on top will certainly affect your work performance.

I don't know if you can work with your workplace to reduce your hours, allow you to do some work from home or any other flexible arrangements that may help.

Most CALS cannot work full time once their PALS are not safe alone.

 

[SanNicolas]

Thanks Tille, I've been reading posts for some time now, in order to learn as much as possible.