Stress from my daughter's health and the New Year is coming in...
 

My daughter will be 25 in May. Early this year, our neurologist diagnosed her with NMO (Devic's Disease). About a year ago, he thought she had MS...she had lost complete feeling in her legs for a period of time and was unable to completely empty her bladder, her migraines were horrible, etc. She suddenly lost the vision in her right eye and our neurologist had her meet with UFHealth Jacksonville's MS Specialist for a 2nd opinion. That was when NMO was considered. Well, she called me at 2am this morning freaking out...she woke up to get something to drink and she couldn't see anything at all...I advised her to call EMS and request that they transport her to Brunswick. She called me at 5am to pick her up. All they did was give her a shot. She still has the migraine tonight and she is still completely blind. I called our neurologist and we are waiting on a return call. She is having a problem with urinary retention again.

I feel like I never go into remission. I am going to see what I can do with SS tomorrow to amend her SSI application to reflect total blindness. I am looking into resources to teach her life management skills as a blind person and I am going to try to help find her affordable housing closer to me and my son. Any ideas on the life management skills? Any suggestions would be welcome to help with my stress level.

How scary that must be for her and you, too!

I'm sure her neurologist can give you some resources to investigate for her to use IF the symptom (blindness) is permanent.

If it were me I'd let the Neuro examine her and possibly do an MRI with contrast. Has she ever had an MRI before? Does she have a definite diagnosis of either NMO or MS? Has she ever had optic neuritis?

Please let us know what transpires after you speak with the Neuro.

She has had an MRI before. Optic neuritis is how she lost the vision in her right eye last year. It was an acute and single occurrence (sp?). That is when the neurologist and MS specialist determined that it probably is NMO and not the MS that she has been diagnosed with. I will keep you posted.

Switched to the computer rather than the Ipad for the response on this one. First off, I pray that this is a temporary symptom and not a permenant one for your daughter, but one thing that is important is making sure she's getting up and walking around the whatever home she's in, check for trip hazards basically anything under waist height put away some place until she gains more confidence in her ability to mentally map out her spaces. So ottomans, step stools, coffee tables and the like need to be moved away from anywhere she might be walking or she'll end up frustrated and with quite a falls and whacks to the shins. It takes time to learn how to use one of the canes for the blind and there's many a blind person that doesn't use them except when out in public places where they can't memorize an area to maneuver around in.

When it comes to eating and drinking, that too, when you make her up a plate take her hand and place it over the different food items and for now go ahead and cut up any meats and such, if it's going to be permanent she will eventually learn to cut her own food, it takes a bit of trial and error to get to that point though. When she fills her cup with milk, water, juice whatever, have her place her finger inside the cup and fill until the liquid touches her finger tip. Given that most people like to get a drink of water in the middle of the night it's important to learn how to fill a glass when you can't see what you're doing, and you don't want to go chasing people down to get you something to drink in the middle of the night.

Also while it's great you're helping her with the disability claims and hoping to move her closer, make sure she has some kind of hobby. She's young and depression is a major concern even if she learns that it's only temporary, when your whole world is black its a very bleak world initially. I assume she never hung out with blind folks to learn braille. But there's still books on tape, if she like painting she can still paint with a mild amount of assistance in organizing her paints, same thing for drawing, that can be done without sight and is actually kind of fun once you start giving it a whirl. If she likes to write, all keyboards nowadays have the raised "home keys" hint, on the f's and the j's to let her know where her fingers are at, so if she's into computers there's still a ton she can do with a computer without her eyes, and there's not a musical instrument in the world that you need sight to play so long as you can remember the notes or play by ear. But it's so important to find the things that she can continue to do to maintain her 'independence' that will really help alleviated the stress of losing ones eye sight.

Thanks to a bad run in with some fiberglass I spent a week blind except for the little bit of light I got to see when removing the bandages and applying more oniment to my eyes. Coffee tables were my biggest foe. But the DH and I did learn that "pushing" the cart at the store while he pulled and guided it along from the end of the cart made it to where I could go out to the store and walk with some semblance of normalcy. There was actually far more I could do, without my sight than I initially thought when the doctors first told me they were going to cover both my eyes and basically send me home to fend for myself, come back in a week and they check my eyes again. :eek: I spent the first day huddled up in bed practically crying anytime I had to pee, refused to eat the first day, and made a major mess trying to get something to drink out of a juice box of all things, I mean how hard is it, straw to mouth and suck, yeah... except for when you accidently pull the straw out and you spend the next 20 minutes trying to figure out how to get it back in the hole and in the meantime you're spilling half it's contents all over the bed, that you refuse to get out of.

That lasted the first day, second day I didn't care... make a mess I could care I need something to eat... forget the juice boxes, straws or screw on cap bottles, just give me a regular old glass.... Let me at the computer, let's go wonder around the store... I swear to god if this coffee table catches my shin one more time I'm throwing it out the window!!!! Son of a.... where's the window???? But I played my little electronic piano, I had fun trying to draw, by the end of the week I was knitting and crocheting, still writing on the computer, drawing with and hand writing with a lot more precision, could walk comfortably around my house, still couldn't cut my own meat at dinnertime, but I could fix myself lunch, grab snacks, get drinks, use the restroom, pick out my clothes and get dressed (though my DH did have to go through my sock drawer and pair them all up but I made sure I wore different styles so when I washed the laundry I could pair them up myself. And the day before the bandages came off I did do two loads of laundry, folded them up and put them away without really even needing to think about what I was doing.

I couldn't work, but I could keep myself entertained, I could keep the house picked up, do the dishes and all that, really aside from not leaving to go to work every day and not being able to cut up my own meat at dinnertime, my life didn't feel all that different at the end by the end of the week. And I found myself for about a month afterwards needing to tell myself to open my eyes and use them, don't just walk around with them closed half the time, it actually took longer to get used to seeing again than it took to get used to not seeing. But then I didn't have much choice in the matter, we were relatively poor back then, my DH couldn't take a week off from work to stay home and take care of me even if he is the one who got fiberglass all over my pillow that he brought home from work, I should have filed a workmen's comp on that :D, but he was working 12-16 hour days, still does, and that left me in the sink or swim mode. One needs to drink within a 16 hour period, because thirst drives you to find a way to get something to drink, you'll likewise have to use the restroom at some point in a 16 hour period, and it gets exceptionally boring just sitting around doing nothing, so you got to find something to do, when it's only you, yourself and you for company in a 16 hour period.

Hopefully this at least gives you a starting point until you guys can learn if it's going to become a lifelong adjustment or temporary adjustment. But seriously, unless she is bound to a wheelchair, make her get up and walk around, don't let her think her life is over simply because she can't see, I knew a blind lady growing up who taught me how to read and write in braille, but she had a job, she had pets that she was able to care for and even knew their names, she painted some of the most beautiful paintings even though she'd been blind since birth. She could knit, crochet, she was single and kept her house immaculate even though she couldn't "see" any kind of mess. She was an amazing cook. Sincerely if not for the white cane she used outside the house, I don't think anyone would ever have picked up on the fact that she was blind. Granted she had her whole life until I met her to adjust to not being able to see in a sight driven world, but frankly given the cars they have on the market today I wouldn't have been surprised if she would be driving by now. Beep beep you're too close, blurp maintain your lane, meep blindspot monitor.... I mean seriously, between gps and all the alarms they have on cars today a blind person could practically drive a car, throw in a phone app that warns you about stop signs and they really could operate a vehicle.

She was an amazing person who just so happened to be blind, not amazing because she was blind, but amazing in her own right and lived a very fulfilled life. And oddly enough knew more about color theory than most people do that can actually see the colors. She worked in computer design of all things! Something you would generally think sight was a necessesity. I mean sure we're talking back in the Commador 64 days when graphic design was done through a series of codes, much like the nearly forgotten art form that is html for websites, but still you would think someone would need to "see" the results of their coding to decide if that's really the placement they want for each of those little (large) pixels on the computer monitor. You had to code for 600x400 pixels each screen...to do that without ever seeing the results of your coding... just blows my mind even to this day.

bddouglas

Sorry to hear of your daughter's plight. Just a quick addition to Starznight's useful suggestions. For getting a drink during the night - I often need to sip water at night due to dry mouth from Sicca syndrome but leaving a glass of water on the bedside table was a risk because I would often knock it over. Simple solution is a sports bottle (I was able to find a smallish one) with pull-up sipper top - fill it up before bed then I don't even have to get out of bed for a drink. If I knock it over but have forgotten to close the top only a few drops spill.

Re life management skills if the blindness doesn't resolve here's a link to one service whcih you may already have found: the Florida Division of Blind Services. (there may be other organizations)

Main Web Page - Florida Blind Services

It seems as though the only Rehabilitation and Independent Living program center is in Daytona Beach - some distance from Jacksonville but it is a funded residential service. Check out the 'Main Menu: FAQ's' and 'Programs & Services: Independent Living and Rehabilitation Center'. There is also a district office in Jacksonville which may be a place to start.

It must be an anxious time for you waiting to get a confirmed diagnosis, especially over the holidays when clinics may be on short hours. If the blindness is confirmed permanent then a residential skills training program could be a positive step to adjusting before moving to a new house. Being in the company of others in the same situation could also help your daughter to regain some confidence and adapt easier.

I hope for you and your daughter's sake you hear back from the neuro soon.

Take care

Starznight and bluesfan...thank you both for your insight and suggestions, they are all helpful. The medical assistant at our neuro's office actually (strongly) advised me to return to the ER with her this morning. Our neuro on the neuro on call. We will be following up with him in the office on Tuesday morning and finding out the results of the MRI. We were actually talking about short term residential living so that she can learn life skills and I found a non profit education service that provides audio assistance with Braille distance learning supplies.
We should be finished with the remodeling of our home within the next 2 months and we will be adding an efficiency apt (without cooking area) for her. She will share meals with us and just have her room and bathroom separate. She likes that idea, she will be near and still have a chance to be independent.

I will keep everyone posted with what the neuro has to tell us on Tuesday. Thank you all for listening.

What an awful turn of events. I sure do hope your daughter's vision returns. Please pay attention to your own health during this. We saw what happened to Debbie Reynolds. :(

Thank you for the reminder Sparky10. My son and daughter-in-law are quick to remind to rest and eat. But, you are right.

Keep us posted...wow how quickly things can change health-wise:(

Hi bddouglas,

I am very sorry to hear your Daughter has NMO, how difficult for both of you :hug:

An excellent resource for NMO is The Guthy-Jackson Charitable Foundation. They do have a forum which will enable you and/or daughter to talk to others with NMO. Home - The Guthy-Jackson Charitable Foundation

I know just a very little about NMO and that little bit is with NMO it's important to be treated with steroids. There is a blood test for NMO, a negative does not rule out NMO but a positive means NMO.