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  #11  
Old 07-28-2016, 12:16 AM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
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Ron, your last post compelled me to say that I had a really negative awful horrendous experience with my ltd. It is hard to get benefits for so called invisible disease. But Note there are special gold standard tests to establish disability. Your neuro can prescribe a spectro Mri if he thinks it will show the neural misfunction, or a visual evoked potential to show an area of slowing of info; there is also a specific paper test he can prescribe to show your cognitive deficits (I can't tell from your story if u did that); there is a physical PT test to show lack of endurance Also the MS society has info on getting benefits from SS and ltd, and you may have a union rep to help too. Don't forget to Review the rules of your benefits and Get a free consult with an attorney. All this said, I'm so sorry you are going through this. I know you will find your way through all this. I continued to improve for years after my first attack. Keep trying. Don't give up!
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  #12  
Old 07-28-2016, 01:57 AM
cl3me cl3me is offline
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Join Date: Mar 2012
Location: Winnipeg, Manitoba, Canada
Posts: 72
Default Vision issues and fatigue

Hi Ron,
Bad bout of optic neuritis left me with permanent vision loss in my left eye (don't even make it on the eye chart), afferent pupil defect (doesn't react to light properly, sluggish reaction), central scotoma, and no color vision. My right eye is perfect. With both eyes open field of vision has some spots that are blurry/out of focus. I am light sensitive.

My occupational therapist sent me to the Canadian National Institute for the Blind for evaluation in their low vision clinic.

Discovered I need large print for reading comfortably for long periods, magnification of 1.75 works for me. If I can't get large print I use plain old "reader" magnification glasses I bought at the drug store.

Polarized sunglasses work for me as well, the extra reduction in glare ahelps with the light sensitivity, and the improved color contrast has been a huge help for driving especially.

I use ZoomText magnification and reader software at work with 2 side by side monitors. I was recommended to "listen" to my emails and articles using the spoken reader function, I don't use this as much as I should. The software allows for different use of contrast colors too, helps reduce glare. If you require magnification of 2x or less I highly recommend the software, my company footed the bill when I gave them the assessment letter from CNIB

They also recommended for me turning down lights and using task lighting. I don't use this yet, but I may be moving desks and the bright fluorescent lights bug my eye...

Covering the bad eye helps too, but was told to use for short periods of time only, extended use of patch may cause "lazy eye", will often see me covering an eye to read for short stints, or when I'm trying to see the bus route number lol.

I was pleasantly surprised how addressing my specific vision issues helped with fatigue and cog function.

I hope you can find some adaptations that will help!

Karen
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  #13  
Old 07-28-2016, 11:15 AM
Suebee Suebee is offline
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Location: Houston, TX
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Excellent suggestions Karen ! I was given only general tips like using zoom function on PC and magnifying glass for paper. Struggled on return to work but I intuitively dimmed lights, and used polarized glasses. A ruler I found useful to run down a page or to get eyes to scan across page on a sentence by putting it under the sentence. I will look into the software you mentioned. A therapist told me generally to use all my senses to get info into in my brain i.e. Hearing info, seeing info, writing info. But the special software to read emails or articles actually tells me how to that. Also, I find summarizing /synthesizing out loud to myself as I get ready in morning in small bits helps me encode it in my brain and retrieve faster. There is also timer apps for billable work and I played around with one and think that this kind of app would be helpful with both multi tasking assignments and documenting time each used. However, The learning curve on the timer app made me put it aside. I would love to hear more software/ apps that other MSers find helpful to aid their workday, workflow and even home calendar.
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  #14  
Old 07-30-2016, 09:48 AM
girl1dir girl1dir is offline
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Join Date: May 2016
Location: Rio Rancho, NM
Posts: 64
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Quote:
Originally Posted by RonRuns View Post
Back from day two - "Return to work program"

I had more simple tasks to do: look up order items in a catalog and fill an order form: two hours.
Headache, blurry vision from the start, light nausea.
Then met with the psychologist of the program. She asked questions to get a first idea of my situation. I gave all my energy to focus on the questions and answer, through the fog, headache, vision issues.

One thing that now strikes me is when she told me that I don't seem totally disabled as I carried the conversation fine. I didn't comment on how it was difficult. Now, Im wondering if I'm expected to work feeling like that? Headache, nausea, blurry vision and spending all my energy on what seemed trivial before.

I'm going tomorrow again and talk about it to the occupational therapist.
Maybe you should concentrate, but not so much that you come off as "normal"?? if you fight so hard inside yourself to pass tests or act like others expect, they'll never see or understand the difficulty you have at work.

I read somewhere that a woman was continually disapproved for disability because she always spent time to make herself look good (do hair, make up, etc.) because it made her feel good but also hid her problems. Husband said, show them how you really feel... she did as he suggested and boom, approved. She stopped fighting it during interviews, tests, and paperwork and showed her disabled self. She admitted it was VERY HARD to do, to let others see her like that, but it was the thing she needed to do to get the support she needed.

Good luck!!
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  #15  
Old 07-31-2016, 05:31 AM
MissP MissP is offline
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Join Date: May 2016
Location: England
Posts: 17
Default Understanding Fatigue

Well, every day is like pot luck! I have found that the fatigue is very random. I am also learning on a very steep learning curve, that I am past the point of pushing as much as I can. I have had to slow a little and spend days not doing anything otherwise, for me and I don't know about others, it is like I have run out of whatever we are supposed to have to keep us going. It is a balancing act. Then, like a few weeks ago, I woke up without pain, thinking free and feeling well. So I went to the seaside for two days and it felt like a month. If I am good and don't have the massive muscle pain, fatigue and brain fuzz, I take advantage and do something nice or go somewhere as I don't know what will happen by the end of the week. It is a very different life to before and I have found that people have drifted away but, I still have quality in every day and don't concentrate on the bad things too much. I always say that the fatigue only comes with a day with a Y in it ha ha!
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  #16  
Old 08-01-2016, 04:16 PM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
Posts: 498
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Well said MissP! You explain the unpredicibility and impact of MS on life perfectly! Reassures me I'm not crazy.
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