[Anonymous May 16, 2007 at 10:15 pm Post count: 93172]

#1020174

Good afternoon fellow Warriors,

It is a great privilege to present you the newly designed NGDF homepage. It was designed by Al Loots, of Raven designs. He offered a year ago to redesigne our homepage. He and I have been working together (mostly Al) to transfer data and information over to the new homepage design. Please give it a look I’m sure you’ll be shocked at how beautiful it is, and we thank Al and his design team for the beautiful job they did.

Little by little, I have been backing out of the design of the NGDF sites. Most of you know I designed the old sites ,home page and the bulletin board. Due to health issues I have given over the design portion of it to different folks. They too are volunteers. You see, I was was getting painfully slow in responding to requests for information and changes. The reason is I have a benign tumor in the center of my spinal cord between C7 and T2. It is pitching off the nerves going to my arms. Over the past two years I have slowly and steadily been losing my fine motor skills in my hands. Things like typing became very time-consuming and frustrating. I am currently able to use my hands to do the things I love to do like, Indian beadwork, Porky Pine quill work, and of course writing my novels, for only three hours a day. Imagine a writer who can’t type, and you see my frustration.

The good news is, all my gross motor skills work fine. I can still drive, do yard work and chop down trees. Just don’t ask me to thread a needle, or to write you a note, or type you a simple line. The tremors in my hands prevented me from doing that. The really weird thing is my hands don’t tremble if I’m not doing anything. But as soon as I try to use them they shake all over, except for about three hours a day.

So trying to fit everything into that three-hour window that needed the use of my fine motor skills became a daunting task. So each day I write down the list of things I need to do that day and try to figure out which ones will eat up my three hours of use. Frustrating as all get out.

I have been using voice recognition software to type for about the last two months. Being a writer, an editor and a volunteer here, usually has me writing at least six hours a day. Now with voice recognition software I don’t have to use my hands at all and that frees my hands up for other things. I can use the program on almost everything on my computer. I use it to open, close files, do my e-mail, make presentations, it is truly a tremendous program. This is one of the reasons that you haven’t seen me much on the bulletin board.

I will still be responsible for the information on the home page. I can read the text into the program that writes the homepage and it updates the text. Like I said we had some great things coming down the Pike the new homepage is just one of them. I am working with their service provider to completely revise the bulletin board as well. Wait to see how beautiful that is.

So I am still here just not as active. So if you’ve sent me an e-mail and I am a bit late in responding now you know why. I will give you I probably had over a hundred e-mails that have been working back on them to answer using my voice recognition software.

Love to you all,

Jake George,
Facilitator
National Graves’ Disease Foundation
Co-Author: “Graves’ Disease In Our Own Words”

[Anonymous May 17, 2007 at 7:01 am Post count: 93172]

#1076234

I will keep you in my prayers Jake. Thank-you for all you do! You and your warrior spirit is an inspiration to us all.
Renee

[Anonymous May 17, 2007 at 8:34 am Post count: 93172]

#1076235

I love the new home page. I can’t wait to see what else is coming.

If you love this message board, you will love the conference in October. When I went to my first conference, I wasn’t sure what to expect. My favorite part of the conference is being with other people with Graves. I was thinking that I would learn more about Graves which I did. Just spending time with all you is what is so important to me.

I’m so glad that I attended that first conference. I’ve been to three conferences now and don’t want to miss any.

Don’t be worried about coming by yourself. I’ve gone by myself without any family members. If family members can join you, there will be sessions just for them. They’ll leave with a better understanding of what we go through. Whether you come with a family member or alone, please join us in October.

Jake – take care of yourself. As always, you just keep trucking no matter what is happening in your life. A true warrior.

Linette

[Author]

Posts