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christopherwade

New member
Joined
May 18, 2011
Messages
9
Reason
PALS
Diagnosis
05/2009
Country
CA
State
sk
City
lashburn
i have mnd but nobody at work knows it. they really don't care to know why i walk funny or am unable to hold anything. i am a quiet person but now i am getting worse and i am unable to perform my old manual duties without help they think i am lazy and i am tired all the time. i am in the process of working at something less physical, but i am still doing physical labour that causes me to get worse. so, i am wondering if i told my boss what is happening would he let me go and say i am a liability or can he do that because of my rights(if there is such a thing). i've been there for 7 months. i don't know i am really getting sick of trying to hide and feeling like a loser. please, what should i do. my wife is really angry at me for being the way i am and she really don't see what is going on with me and wonders why don't i figure something out. you know i do really feel like an outcast, cause if you don't have cancer and i'm not bleeding... oh theres nothing wrong with you just excercise and get stronger you lazy slow no good for nothing. i told my dad about my disease and he said well i'll let you go i don't want to talk to you anymore cause i don't want to hear you. i am thankfull for the chance to know you guys wouldn't be cool if we could meet face to face sometime. thanks guys
 
Wow Christopher. In my humble opinion you need to let your boss know what's going on. With an ALS diagnosis you should be able to get on Social Security and Disability quickly. Contact your local ALS Society. They'll help you out with the steps it will take to get some help. They'll also send you lots of literature explaining everything that's going on with you. Maybe that would help your wife understand better so that she can help you rather than be angry with you.
 
Christopher, I am so sorry that you are going through all this. As Marta said the key breally is education, especially where your wife is concerned. She needs to understand what you are going through. Its hard at work, though. I am lucky I work with doctors and I was upfront and honest about the fact I had a neurological disorder. It is pretty obvious as I am sure it is to your employer. If you feel you can, maybe tell them that you have a condition that is making things hard for you. They may or may not be supportive, but really you need to look after yourself and if its getting too hard, then its time to stop. Your employer may have something less physically taxing for you to do.

Its a very hard place to be, I am sure.
 
I obviously don't know the laws in Canada regarding accommodating disabled workers, but I would think that you could have some accommodations made for you at work. You haven't been there that long, but can you do most of your job as long as you are sitting? I'm self employed, and I feel fine as long as I'm sitting down, I stand up, get all wobbly and think "OH CRAP!" There are many things you can still do... at least until you can't, if you know what I mean.

This isn't your fault, and your wife needs to go to some of the MD meetings or something to work out her feelings of resentment. I'm assuming since you said that you have a diagnosis, that you've done the neuro route, with the MRIs, EMGs, etc. Did your wife go with you to these? She needs to get supportive of you, and things will improve for both of you.

Good luck...

Helen
 
Christopher, I have so many questions!

You stated you have a diagnosis of MND. Do you know what that means? Do you understand what ALS (or whatever MND you have) is going to do to you?

You have to tell your employer about your diagnosis. Otherwise, your poor performance on the job may be written off for some other, less desirable reason. Furthermore, your presence on the job may make things hazardous for others working around you.

It seems you need to develop a support network around you. There are many Canadian neighbors of yours on this forum that can advise you on how to contact the Canadian version of the ALSA and MDA folk. Your family also need to understand your diagnosis and what it means now and down the road.

I feel for you!
 
thankyou very much for your advice guys. my next visit i'll ask my wife to talk with my neuro. and at work i'll let them know whats going on. they should understand when things are put the right way. you know people should be educated about this stuff and it has to be me to get this started cause it's happening to me. thanks again and God bless
 
Hi Christopher

Sorry to hear about your troubles.

Are you getting any benefits at work such as group insurance? Will you have any income if you stop working? Disability insurance?

Are you going to an ALS clinic? Do they have a social worker you can speak with about any available financial help?

As to your work, your employer should have a duty to accommodate to some degree - but due to the nature of your work this may be difficult. Plus if your employer decides to let you go, although you may have some recourse against him, the process would be long and expensive.

Before speaking with your boss, I would check into what benefits you have, if any. Maybe you are entitled to some disability insurance under a group plan - which you might lose if you are let go. Again, you would have some rights in that case but it would be a hassle. Hopefully your employer is helpful and understanding.

I'm also sorry to hear about the grief you are getting from your family. They need to be educated about the implications of your diagnosis.

Good luck and keep us posted.
 
Christopher,
I'm so glad to see that one of our knowledgeable members in Canada was here to help. I'm sorry to hear you are getting trouble from family. I admire your willingness to educate others about MND. I became the ALS teacher at my job too because no one had ever heard of it. We will all be here to lend a supporting hand!
Good luck!
 
Christopher, I'm sorry, I didn't realize you are in Canada. Welcome to the Forum and I'm so sorry you're having so much trouble. Good luck!
 
Christopher... I agree with what everyone has already said. I'm going to add a couple of things.. see if your ALS group or your neuro can point you in the direction of a good support group. The group our neuro ran was invaluable, especially at the beginning. Also.. is there a chance you could benefit from some antidepression medication? It's pretty common for this to be one of the symptom treatments PALS can actually benefit from. Take whatever help you can get to make this journey easier!
 
Christopher, I am so sorry for what you are going through. Education on this disease is vital. It is rare and not many people understand what is going on. Maybe if you give your wife some information on it will help her. I had some similar issues with a couple of my children. I know it must be frustrating having to deal with issues like this. Most important, take care of yourself. Talk everything over with your neuro concerning your work.
Just know you have a lot of friends here.

Beckysuenc
.
 
Hello, Christopher: - - - Sorry for your many problems. Are you a veteran? I understand that Canada covers ALS for their citizens who are vets. Certainly worth checking if you are a vet. Good Luck ! ! !
 
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