I would be very interested in this book. My life

has been so messed up lately I could have missed a post.


amy and gary clark

 


Chris


 


that is how Gary had been for many years. He could

still get around, but hasn't driven a car in years. Not that bad to deal with.

But now, this stupid disease took his good eye. Right eye is black, sometimes

some light and shapes, but that is it. Now his good eye is like this along with

the other I said before. He can't get himself around in the power chair without

me directing him which way to turn. This has be a TRUE test of our marriage and

patience. lol


amy and gary clark

Last Spring, Gary started having serious problems

with his good eye and now he is blind with somewhat limited vision. It changes

all day long every day. Anything from completely blacked out to some detail

vision across the room and then everything else in between. Since he has moments

of some fairly clear vision, we are hoping that one day, the connection will

reconnect. Can't do anything but hope.  Now the weird part....he can be

watching "at" TV when the TV changes to a scene of like he is standing in the

yard and looking at our house or looking at a house he grew up in and hasn't

been there isn years. It is like a movie playing. My thouhgts is that this is

more of a brain lesion than the optic nerve lesion. Like right where the optic

nerves go into the brain. That is just my reasoning because nothing else makes

sense. I wish there was an eye doctor somewhere that would love to hear some

weird stuff and try to give us some reasoning. With these attack(s), it feels

just like when Gary was first sick and there was no internet and no knowledge to

be found. Not a place a like to think about


amy and gary clark


 

I know this is based on spinal cord injury, but in a

sense, when we have had NMO for a while, it is like having an injury to the

cord. I found something like this along time ago. I was glad to relocate it.

Hope it helps some.

href="http://www.spinalcord.uab.edu/show.asp?durki=21621">http://www.spinalcord.uab.edu/show.asp?durki=21621

Gracie


 


Gary has had scaling and itchiness for some time.

Basically it is around the scalp line, sometimes in the scalp, and it is always

in his beard / mustache and around it. He even gets in around his ears and

inside them. A while back he was dx'd by a dermatologist as to having intense

dermatitis.  The internist the other day told him that is looked like

psoriasis to him and has him seeing a dermatologist next Thur.  Anxious to

see about it. We have noticed that Gary's tends to flare with the NMO. Not

always, but if the disease kicks in, his skin already has broken out. Now his

doesn't itch that much. The skin gets a little red, real rough, raised up from

his other skin and then scales off. Steroids use to stop it, but not as much

now. Will update everyone on this as soon as we know what we are dealing with.

Gracie, I hope you can get some help. Don't know if this did or

not.


amy and gary clark

We finally got in to see the internist here in our

town. He spent over and hour with Gary asking questions and such. That day, his

temperature was 97.6. We didn't think too much about it because for some time

Gary's temp has run low.  After discussing things with the doctor and

looking on the internet, Gary's new symptoms and some we didn't really

recongnize, seem to be pointing to a bum thyroid.  Lots of test going on to

rule out other stuff, but the thyroid could be a lot of his problems lately, of

course, other than the NMO.  Gary is retaining fluid really bad now, even

on fluid pills, he has had significant hair loss that has been going on for

years. We just attributited it to getting older. Very dry skin, sleep disorders.

He had insomnia for a couple of years and now has bouts of wanting to sleep more

often. Brittle nails, yeah, I put that one on age too.  Steriod use and

lots of it, all the other meds, could have done some damage. I'll let you know

anything we find out. You know, it is not enough to look at just your NMO, but

you have to watch out for so much other stuff that stems from the effects of the

NMO on the body. I know many of you have a list of docs you go too.  We are

going to join up with you I guess


 


amy and Gary clark

Welcome Angella


 


Well, not happy you are on this group for the

reason you are on the group, but glad you found us. We all do have different

stories. My husband, Gary has had NMO 30 years. Of course he just found out what

he really had in the past 5. He went 10 yrs with no definite dx and then went 15

diagnosed with MS. He is in a wheelchair most of the time now. He is able to

transfer and walk with my help, but he is legally blind. He was only completely

blind in 1 eye up until last year. He has some sight in the good eye until about

a year ago and then this stupid disease hit his good eye hard. His eyesight is

very limited right now. goes from seeing detail on something far off for a

couple of seconds and then black and then white. Crazy nerves. STAY ACTIVE!!

within reason. Don't over do anything and rest when you need to.  That has

been the secret to Gary's ability for so long and he responds to the meds well.

Sounds like you must be doing pretty good with meds too.


Amy (wife / caregiver) and Gary

Clark

Julie, Gary always ran a low grade unexplained

fever in the earlier days of his NMO. They gave him high doses of doxycycline,

IV, fearing he had lymes disease. He sweated profusely and had a horrible odor.

After that, he has not run the fever. I have NO IDEA why all of that happened.

That was long before they knew he had NMO.


amy and gary clark

I thank you all for your cares and concerns. Gary and I both are very

spiritual people. there have been lots of prayers sent up on his and my

behalf. Some of you do not know that Gary has had NMO for around 30 years.

He hasn't been diagnosed that long though.  We have been dealing with some

really bad effects of the NMO for the past 15 years. 2011 has hit us both

hard. It seems as though it has been more bad than good and it has taking

its toll on both of us. Until 2011, Gary and I have kept our chin up and

mostly stayed positive. I do not want to go through 2012 with the same

attitude that I have had this past year and I think Gary feels the same.

Depression has been looming over us all year. I want to be positive and

hopeful for better things in 2012 but I will tell you, our first few days of

2012 have held true to one thing after another. It looks as though Gary is

starting the year with a cold. He has had fever that we could not quite

explain. Nope, not UTI because we are already dealing with that one. We just

need something good to happen in our lives, which is happening in April

/May. Our first grandbaby will be born. We know it is a boy. So I hope each

of you have a great year with a positive spirit of hope for better things.

amy and Gary 

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As fearted, Gary was told his sight is due to a

previous attack and there is nothing they can do. Doc had never heard of the

study in Germany, but that is no big surprise either. He did know NMO very very

well. had see a few patients over the years but very few. We are just hopeful

that some of Gary's sight will come back. maybe, maybe not. All we can do is

continue to hope and move forward. We already have been making some adjustments

in and around the house like a white dinner plate, unless we have something like

chicken and dumplings. Then I have a dark plate for that. He doesn't know it

yet, but I got everybody that was going to get his a Christmas present to give

money to me. I ordered him a voice activated phone dialer. Sight problems and

not so good hand dexterity makes dialing a phone almost impossible. I wll get

family together soon, so that I can give that to him early. We are both pretty

positive about this. Heck! you can only mully grub for so long and I don't like

being there. Hope everyone else is fairing better.


amy and gary clark