At some point with a disorder like Episodic Ataxia, the eventual question one has to ask him/herself is  - Is it time to go on disability?  This is a question that eats at the very core of who we are when we have a disorder that so dramatically affects our quality of life.

The decision to go on disability was heart wrenching for me.  I knew I was not carrying my weight at work, and I knew others were covering for me or at least that is how I felt.  I had to go to the supply room several times a day to lie down because I always felt ataxic.

I earned two degrees.  I loved the challenge of work.  I liked the interaction with my coworkers, but my body was not cooperating.  I first went on partial disability but then with time went on full time disability.  I will never get used to not working.  It’s not in my nature.

But at some point, I had to make the decision on what was better for my family.  The questions that went through my mind was could I afford it? What would be the impact on my family? 

For those who have Episodic Ataxia or any other disabling disorder, there are steps one could take before EA becomes too disabling to work:  Make sure you are well educated so you can have a sit down job,  That will allow you to be in the work force longer;  Make sure your company offers 3rd party disability and if the option is they will pay for 50% or 66 2/3, but you have to pay for the extra premium if you take 66 2/3, choose the latter option;  Make sure you are seeing your neurologist on a regular basis so you a medical track record for Social Security.  I worked in the private sector, but government jobs are a good place to be for the disabled because these jobs cater to the disabled in many cases better than the private sector.

A couple of other items you might consider are staying out of debt, and save every penny you can, because the unknown of the disability is the scariest part.  If you are out of debt, and you have savings you will be better able to handle the coming storms.

We have not been dealt a good hand, but there are things you can do now to prepare for any unforeseen eventuality. 

 


Comments

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10/11/2009 22:53:34

I knew I was not carrying my weight at work, and I knew others were covering for me or at least that is how I felt.

 

Phyllis Wilcox

05/13/2010 21:48:56

I have ataxia and I can relate to everything that you said.

 

Shelly

05/26/2010 00:54:01

Should I stay on the Short Term Disability/Long Term Disability or apply for SS Disability?

 

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03/14/2011 20:41:21

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Kelly

12/09/2011 10:42:16

Hi there, just wondering if you have noticed any links between your diet and attacks. You mention that caffeine and alcohol can bring on an attack. What about wheat or gluten? You commented that you had been out to dinner before a new years eve party and then had a severe attack. What did you eat, do you feel there is a link? I am in the process at the moment of exploring the link between what I eat and my own symptoms. I feel that for me, there is a definate gluten correlation. Cheers.

 



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