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BroxibeAr
28th January 2015, 13:06
I've had MND for 18 months now, in that time I have been able to attend work. However since the start of the year things have deteriorated such as mobility to an extent that I am a danger to myself.

When did others stop work?

Steve
28th January 2015, 13:13
I am lucky that my job was office based so I have been able to continue working from home. I can log into our server from my home PC. My company have been amazing in helping me, I am also lucky that the MND team here gave me the Eyegaze equipment.

I have been doing this since Nov 2013. If I didn't have this I would have had to stop work.

Jock
28th January 2015, 13:22
I worked nights in a Supermarket, so it was a physical job with me on my feet most of the shift. I worked with foot drop using a cane until last May. I had to stop as I needed a walker more to get around. I went on Company sick pay then SSP. I've been let go now and get PIP and ESA.

willsandco
28th January 2015, 13:26
Hello BroxibeAr. It would be lovely if you could work from home, like Steve, wouldn't it? The trouble with giving up is that you miss the social interaction sometimes. I was retired when I got diagnosed but I still have a website poetry business and I do that from home. It is a shame if you feel you cant continue! Can you speak to your employers? Love Joycie xx

BroxibeAr
28th January 2015, 13:28
Thanks, you've gave me an ideas, as my job is computer based.

Steve
28th January 2015, 13:47
Thanks, you've gave me an ideas, as my job is computer based.

I use Lync to msg collegues when i need a quick chat. It can be used for video conferencing as well so you could even take part in meetings. The amount of tech available is amazing, I am sure you know that better than me.

I did 6 months of being driven to work in my WAV paid for by access to work. The driver was an events steward so driving me to and from work suited him perfectly. Thats assuming your work is wheelchair accessible but it is an option.

njm
28th January 2015, 14:35
Steve;
i am grappling with the same issue at the thread posts. I have continued commuting by train to London from Guildford butr it is now becoming dangerous. How far were you from your workplace? I doubt access to work will help me with this distance. My work is wheelchair accessible. Could you say more about your arrangement? Did you organize the driver yourself?

Regards

Charles

Steve
28th January 2015, 14:57
My work is Wakefield and I live in Sheffield so around a 50min - 1hr drive. I got the ok from access to work for a set number of hours per week. We got their number online and they sent us the paperwork.

We employed the driver through an agency who did all the paperwork for us. We then sent in our drivers payslips and ATW reinbursed us in full.

It's not hassle free but was worth it.

Jan
28th January 2015, 16:12
I work for myself, and have done for over 30 years and am finding it hard to let go. When we move house next weekend I am looking to work more from home as the office will be further away (its a few minutes drive from where I live now). I work in the legal system and have sadly had to say no to anymore advocacy at Court, the stress and strain of conducting hearings is beyond me now and my thought processes are not what they were

njm
28th January 2015, 16:37
Jan:

Yep I fully empathize with how painful it is to let go of work. I work in the City in a fast-paced young world. I manage to commute still (just) but need a cane in the building. But my legs weaken by the week so its not far off that I cannot walk about. I do not feel my thinking has changed but I feel nauseous, exhausted and flushed a lot of the time. So my whole persona is subdued and introverted. I struggle to exude positive exuberant energy. I feel I am hanging in, making it through the day. Sometimes my work is at the highest level but its impossible to sustain throughout the day. So I am fast approaching the point you are at.

Keep strong Jan.

Charles

Wise owl
28th January 2015, 16:49
Hi everyone,
Work for me ended when diagnosed Jan 18th 2013, I had worked doing a manual job & I was self employed as well. I was a floor layer & carpet fitter for 40 years, so only ever worked doing one thing, thought that I would have to re-train to do anything else. Then when realisation kicked in, would anyone out there want to take on anyone realistically wit M.N.D.!!?? So now I'm in the same boat as everyone else, knowing the destination, but not having a clue as to the time limit!
So for now, just trying to enjoy as much as possible, while possible, but to those of you out there who can still do a job out there, keep doing it while you can. But know when to call it a day, as I was literally "on my knees" & ready to drop, when I decided to finish work.
Best wishes to all Forumites, Mick.

Sueb
28th January 2015, 19:48
Steve's MND only effects his arms, wrists and hands at the moment. He went sick from his job last Friday after finding it very difficult to carry out his work. He is a Health and Safety advisor at a cheese factory, and hasnt been able do a lot of his job for the last few months. He had become very much office/computer based updating all risk assessments for when he left. He has found it difficult with paperwork, putting together files for claims etc. he also carries out Health and Safety And Manual Handling training and wasn't able to write on boards and show how to correctly bend and lift. Also on the personal side he couldn't dress himself when going into clean areas to audit (you have to change into correct gear) and also using toilet, taking 15 to 20 mins just to pull trousers up! He also found some days very tiring. He has always been very active so don't know how forced retirement his going to go especially because he feels well in himself.
If you can still work and enjoy it keep going it is good for self esteem but know when to stop. Good luck.
Sue

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