This Is MS Multiple Sclerosis Community: Knowledge & Support

I was diagnosed with RRMS when I was 15 years old. At the age of 18, my level of fatigue was so high that I had trouble functioning (I have tried all the drugs but they do not help). I almost completed University. I graduated from high school with a 90% average and I had an A average in the courses that I completed at University. I have tried working on numerous occasions but after half an hour to an hour of work, I had trouble functioning and could not perform the way I was supposed to.


Ten years after my diagnosis, I am on social assistance (last resort financial help) I live in Canada and I am single. Because I got sick so young and was never able to work, I do not qualify for CPP (Canada Pension Plan). Like those who are diagnosed at an older age, I also did not have disability insurance, critical illness insurance or private medical coverage. My parents have always been abusive to me (not physically or sexually however...I will not get into details) when I was growing up and they do not want to help me financially today (which is difficult to accept).



I am left wondering why there is not a program that offers a small pension to those who are unable to qualify for CPP. I am also unable to cover the cost of drugs now and I will not be able to take advantage of the drugs approved in the future. Provincial governments here cover the costs of Copaxone, Avonex, Rebif and Betaseron (those drugs have not helped me).



I know the stress I feel because of my financial situation has an adverse impact on my health. I feel like I would need some financial support. Again, I am wondering why Canada does not have a pension for those who get sick at a young age and do not qualify for CPP.



Here are some question. I would appreciate any advice. Are there any jobs that would be very flexible for me to look into? I may be able to do an hour of work, an hour of rest, an hour of work, an hour of rest etc.... (working from home would be ideal)


How can I have access to drugs in my situation (aside from joining trials?)


Do you have any other advice?


FYI -> I almost completed a bachelor of business administration and I do not have any work experience

Yellow,

Welcome to the forum. It sounds like you have your hands full. It sucks bad enough that we have such a difficult time working. I'm still working, but I could not work at all where I had to walk very far. I'm the same way, I can do a little bit, and then rest, or I'm through. You really have a shit sandwich there with the family issues on top of everything. I know that sounds flip, but I don't intend to make light of your situation. I don't know what to tell you because I was going to say "familly" until I read further down. Then I was going to say "make sure and join a trial", but then you said "aside from joining a trial", so I assume you don't want to be in a trial. I'd say, from what you say is going on, that that would be your best bet. Man, you have a lot going on, but you're still here fightin'!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I do not know how much help I can be because I am in the US and not Canada, but have you considered finding a work at home job? There are many that are legitimate, and I have worked for a few. I am a member at workplacelikehome.com which is a forum that lists at home jobs and has places to discuss each one. Most of these companies don't require much work or allow very odd hours, which can be good when fatigue kicks in.

I wish you the very best of luck!!

yellow i am not sure i understand... what prov/terr are you in? are you on welfare, or disability?

Thanks for the replies!


Loobie, I do not have anything against being in a trial. I am just selective and I do not want to be in any trial. Moreover, I do not always qualify for the trials I am interested in or they might not be offered around where I live




Jimmylegs, I live in Alberta. I am on welfare. I do not qualify for Canada Pension Plan (CPP) Disability Benefits because I have never worked.

oh okay. i gather you're in the 'not expected to work' category. i'm in ontario where they have welfare, and a separate program for long term disability. if you're on disability i'm pretty sure it's a lot more money than welfare.
it must be really tough to take proper care of yourself on welfare income. i know it's hard enough when you're well, let alone when you're sick.
if you can find a canadian work from home web site that could be ideal. do you know what treatment you would take, if you could? the company might have some kind of program for people in your situation.
do you have a good local food bank? a few of my friends work at a local health food grocery store and a 'food for life' charity is always coming around to pick up the organic produce that has started to look a bit haggard. if you could get in on something like that it might help.
also if you could handle volunteering somewhere once a week, that would give you access to something beneficial to you personally, that you'd otherwise have to pay for, that could help too.

Thanks for taking the time to give such good advice JL.

It seems Ontario with the Ontario Disability Support Program (ODSP) has the best disability benefits for someone in my situation. Other provinces have an increase allowance for someone with a disability but it's not much and you are not allowed to have any possessions or to save a bit of money in the bank.



Although, I can think about many problems with ODSP as something to rely on in the long term, for now, that would be much better!



To respond to what you wrote, it is IMPOSSIBLE to take proper care of yourself on welfare. I am seriously underweight at the moment and I am sure that all this is not helping the ms.



I tried volunteering to give my life some meaning but I was not able to handle that. I would love to feel better and try again in the future but it is not for me for now.



The drug I would like to try now is Tysabri




****I guess I am looking for advice as to how I could work, part-time in my field (business) while doing all of my work at home. I accept any advice********

Yellow -- I am a US citizen, who is, unfortunately, ignorant of your wonderful country Canada. Therefore, I am no help with most of your questions.

Concerning MS, I share my thoughts with you: I do not consider any "approved" drug to be effective with MS (not Avonex, not Betaseron, not Copaxone, not even steroids) -- I do not think they ever stop or even slow progression. Do not feel bad if you cannot afford them -- some of us (including me) OPT not to take them. (I am especially negative about Tysabri!)

But each of us must weigh the evidence, the potential side effects, our own situation and make our own decision. If you have questions, ask here -- these people understand your situation and share their ideas with you.

You mentioned being underweight -- this condition may not be all bad. Somewhere on this website someone posted an article which reported that people with serious calorie restriction actually did better with MS than those with normal diets. Sorry, I don't have a link to the article.

Concerning your financial situation, I can only urge you to keep looking, to keep trying as many are doing in this poor economy. Use your social network; make a list of every family member and friend you ever knew and contact them -- let them all know you are looking for a job.

If hiring at all, some companies prefer to hire part-time workers rather than full-time. This might work better for you at this time anyway.

I believe the answer to MS will come soon for all of us, for you yellow and for me.

Yellow, I have no practical advice for you since I am not from Canada. I only want to say that you have been through a lot at such a young age, and I admire your strength and fortitude.
I urge you to contact as many employment agencies as possible, put your needs to them, and make your enthusiasm and skills clear - you have ms and you can't work full time, but that does not mean you cant work or be productive within certain constraints. However, if you work part time, just check that it wont compromise your disability payments and make you worse off.
As for treatment - I agree with Lyndacarol - each must make a decision as to what they think is best for themselves. If Tysabri is best for you, contact your national health doctor - Canada must have some sort of health insurance for people who cant pay for treatment themselves. Also the company who makes the drug may have a programme to help people like yourself ( I believe Biogen are part owners).
My message is only that I wish you well, I really do

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Al