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Hi, it is great to hear you are supporting your colleague and that he is contributing to work despite his diagnosis. My partner and I both work in higher education, so here we have a disability office (with several officers) and an occupational therapist. My partner contacted both, and as and when the needs arise/change they will assess and support him by making adjustments to his working environment. He was told that there is also a scheme that our work place signs up to, which provides funding for purchasing of specialist equipment enabling employees with disability to fulifil their potential.
You do not mention whether you work for a public or a private organisation, but I am assuming that there is no such support in your workplace. I am writing from the UK, so 'systems and procedures' are probably different, but there must be organisations over there that will provide support for your colleague. Wishing you all the best. Danijela
 
I remembered this old thread of mine and just wanted to let everyone know that my partner is still working, five months after his diagnosis and 1.5 years after his first symptom.

People at work have been supportive, he has got an ergonomic keyboard now, and has been assessed by Access into Work agency for any further adjustments. His OT suggested taking regular breaks away from his desk, but he has not been very good in doing that yet. We drive in together each morning (we work at the same university) and it is working out fine.

I guess I just wanted to say that our lives have not changed as radically or as quickly as I was fearing after receiving the diagnosis, and wanted to provide some hope for others who may be either newly diagnosed or wondering about changes that may be coming about post diagnosis.

D
 
I am so glad to hear that. I hope it continues to progress slowly.
 
Danijela,

Thanks for the encouraging post! This sort of news is very helpful!

Zaphoon
 
Glad to hear that Danijela!

Thank you for letting us know life isn't over with ALS diagnosed, like the docs tell you!
 
Hey Danijela,

I am an IT Manager , and I am still working. I am losing some dexterity in my left hand also. As I never could type "properly", I am not affected too much (except more backspace usage)

The biggest change for me so far is not working 16 hour days. Your SO will have to learn about conserving and maintaining energy.

At work, I sent out a broadcast email , with all of the fugly details , asking everyone to not ask about it unless I initiate the conversation. That helped so much , keeping everyone informed.

I have learned to make people come to me instead of rushing off to see them. They will do this quite readily. Stay away from stairs as much as possible (energy stealers).

If you or your SO want to chat offline , PM me.

Glen
 
Glen - very helpful advice. I have been struggling with the idea of a broadcast e-mail just to clear the air. I am still
nervous to do it but your comments have moved me closer. My dept. chair knows and so do my closest colleagues.
I already knew about watching my energy, that one hits you square between the eyes every time you forget.
I'm a math prof. and the University has a great OT program so I have been assigned a couple OT students to help me
get my office and classroom "user friendly" and I have much appreciated that.
best
Dan
 
Danijela
I also want to say thanks for your positive posts. I do remember initially googling about ALS and everything I came across was profoundly negative. You and others like you help such a lot.
Thank you. x
 
Danijela,

Thank you for posting your update. I am glad to hear that your partner and you are adjusting well to the new circumstances and that he has a supportive employer. May he keep working for a long time.

John
 
Glen - very helpful advice. I have been struggling with the idea of a broadcast e-mail just to clear the air. I am still
nervous to do it but your comments have moved me closer. My dept. chair knows and so do my closest colleagues.
I already knew about watching my energy, that one hits you square between the eyes every time you forget.
I'm a math prof. and the University has a great OT program so I have been assigned a couple OT students to help me
get my office and classroom "user friendly" and I have much appreciated that.
best
Dan

Dan , if you want to use mine as a template , or just food for thought , pm me your email address and I will send it through. I added some humor to it , and it was very well received at every level of my company.

Glen
 
Dan,

I'll make the same offer that Glen just did. I also spiced up my email with some humor and I think that's the reason it was well received. People are scared of this stuff and they need to know you're okay. (Well, as okay as you can be, considering.)

PM me if you want a copy of mine.

-Tom
 
Hello. I am glad you guys found my post encouraging and thank you on all your good wishes.

My partner has 'come out' about MND to all of his colleagues, and most have been understanding and helpful. Some mornings we are late for work due to seeing an OT or a physio, or Laurence having blood tests, and thus far everyone has been accomodating. I am trying to encourage him to take breaks, turn the computer off and have some downtime at work, but he is still struggling to do so.

John, Laurence has started talking about a therapeutic dog - my God , why have I ever mentioned it to him?! He wants to call him Rex! Take care everyone. Dani
 
...John, Laurence has started talking about a therapeutic dog - my God , why have I ever mentioned it to him?! He wants to call him Rex! Take care everyone. Dani

Hee! hee! hee! I almost added to my recent posting, "don't forget about a dog". So glad he's thinking about it. I remember getting my dog, Chewbacca, as a few-month-old pup and wondering if I was foolish and that the dog would outlive me. Well Chewie is 4 now and is one of the joys of my life.
John
P.S. I'm trying to attach a few pix of Chewie to tempt you.
 

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Oh I love Chewie he is so adorable, I take my dog everywhere, she is also 4 years old. I even consider her one of the biggest part of my therapy, and I even call her that. Love these pictures, just love them.
 
Hey Dan,
I hate MATH.. Sorry had to get that out. HA HA. I am paying for a tutor for Algebra for my son, because I am so bad at it.. I should not complain mys son is pretty good, it is a high-school credit and he just turned 13, way better than me. I am glad to have you with us, I envy a math brain.. I just have one for useless information..lol..
 
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