Hello all and thank you for your patience. I returned home on May 2 and am now starting to address the queries that were received in my absence. Please be patient a bit longer as I have quite a back log. Queries will be addressed in the order in which they were received in increments of 20 per day. Most of you have requested scholarly literature addressing very specific issues and it takes some time to get them together. In the event that you need help with other issues (insurance, contact info for specialists, etc) please email or leave a message on my machine.

Thanks again for your patience.

Grace

Fellow NMO Patients:

Many of you have sent queries to my email. Currently there are 136 messages. Please understand that I am currently in Hinesville Georgia spending time with my daughter and son-in-law, who have just had their first child (my first grandchild). I will be returning home on May 2, and will be resuming my advocacy work at that time. Queries (both email and telephone) will be answered at that time in the order in which they are received. Thank you for your consideration.

Grace

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

I can't thank the Guthy Jackson Foundation for the informative handbook I received in the mail this week; "Know Your Rights: A Handbook for Patients with Chronic Illness." Hopefully my daughter will not need to use the handbook but if we do we'll be informed. Thank you again Victoria, Bill and the Foundation for looking after us.

Written By Lisa McDaniel March 29, 2012

Super Hero Collin has taken flight...

About 1:15 am this morning, our Super Hero took his flight to Heaven. It was a very long journey to get to this point, but it is here now. While I know we are all sad he is no longer here where we can hold him, we must rejoice in this fact: Collin has been healed. He is no longer in pain, he can walk, run & play with no wheelchair, no walker, no weakness. He can see everything, smile & play. He can finally be a little boy again instead of a patient.

Celebration services are as follows:

Visitation Saturday 5-8 pm at Miller Funeral Home in Oxford, AL

Collin's Celebration of life is Sunday 3pm in the chapel of Miller Funeral Home in Oxford, AL

Any who would like to attend are welcome! We are asking for those who will to wear character shirts for the service &/or visitation. It doesn't matter what part you play in the service, we would love to have you help us make it about Collin. He would get a kick out of watching us all show up in character shirts. Some of his favorites are: any Mario character, scooby doo, Phineas & Ferb, Toy Story, Cars movie, Jimmie Johnson. etc.

Please pray for our family, our extended family & friends as we learn to cope with life without Collin.

Lisa has given me permission to post. Please pray for the McDaniel family. Right now they need our prayers more than ever. Little Collin has fought a long battle against this disease and his little body is tired and worn. Please pray along with the family that a good and great God grants him peace and rest.

Grace

 


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


 

Have just spoken with Michelle. Things are slowly improving and there is a possibility that she will be released from the hospital this afternoon. Please keep her in your thoughts and prayers.

Grace

Just saw posted on Facebook he arrived 12.51 their time all well x

Sent from my iPhone
On 12 Feb 2012, at 22:06, Tracy Owens [email address removed] wrote:
> Yay!  I just got this so I will be praying that everything goes uneventfully.  I can't wait to hear the update!

>

> Tracy

>

>

> 
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