Dewie Stories

Dewie loves to laugh, so we watch a lot of comedy on TV. And she finds humor elsewhere...

Last year I was on a trip and called home from a layover. I got Sarah, who was very excited and told me there was a tornado warning! I could hear a siren in the background and Sarah asked me to call back after she and Mabel had gotten Dewie into the closet. So I hung up and worried for five minutes and called back. Sarah said everyone was OK. They were in the closet and she wanted a flashlight because the power had gone out. I told her where to find a flashlight and in a few seconds she started laughing. I asked what was going on and Sarah said, "Mom's laughing at us. When I turned on the flashlight, there she was just laughing. She thinks Mabel and I are funny with all our commotion."

So Dewie is not a worrier. She leaves that to the rest of us and she picks up our slack in the laughing department.

Dewie loves people. Then she gets tired. From her Mom, she inherited a penchant for brusque good-byes...

We were at the ALS Association support group meeting and it was over. People were lingering and visiting and the new director of the North Texas Chapter came over to say hello to us. She said she had seen us using the "alphabet board" and was intrigued by it. I was eager to show it off and so I picked it up and said we could demonstrate if Dewie wanted to say something, which she indicated that she did. So we spelled out Dewie's message, "L..e..t..s..G..o.", she said. "That's how it works.", I explained as we left the meeting.

Recently, Forrest and Feather were visiting and it was lunch time. Everyone was in the kitchen and I drove Dewie's wheelchair into the kitchen where she could be a part of the commotion. Lots of loud talking. Soon I noticed Mabel had taken Dewie back to the living room, so we all went in and joined her again, talking away. Dewie indicated she wanted to say something, so I picked up the board.

She spelled, "W..h..y..d..o..y..o..u..t..h..i..n..k..I..c..a..m..e..b..a..c..k..i..n..h..e..r..e?" Surprised that our conversation wasn't scintillating, we left her in peace.

I never know what to expect when I pick up the board.

-Pete

Not so Much!

Well, since it says here I'm doing well, I should post an update since a few weeks ago I felt a pain in my chest every time my ventilator gave me a breath. We called my doctor who told us to come get a chest x-ray, and it showed pneumonia! So I was in the hospital for a few days to get IV antibiotics and now I'm home again and doing much better, thank you. The pain went away within the first 24 hours and there was very little fever. I have finished my antibiotics and Pete and Maria and Mabel have been giving me extra breathing treatments to help my lungs heal and its all working. I go back to the doctor in a few days and hopefully he'll agree I am well again.

Meanwhile I have had recent visits from my good friend Feather and my beautiful sister Forrest and my favorite niece Loee. They all just made themselves at home here and became part of the daily routine with us, which I love. Forrest even brought her little dog Brenda who prefers to sit in my lap because I don't wiggle!

Thank you to everyone who has emailed and called and posted replies to my blog. I love hearing from you and I'm grateful to my friend Cathy for getting me to try blogging.

Love, Dewie

Doing Well

This post is from Pete to answer the first question most people ask, "How's Dewie". The simple answer is, "She's well." Medically, she is stable. Its been a little more than a year since Dewie got her ventilator and up until that time our lives were constantly changing as her ALS progressed. But in the last year things have really settled down and we have gotten used to our new lives.

There are many things for us to be thankful for but I'll mention three that seem important. First she has no pain. Many people with ALS have significant pain but not all. Second, we were lucky to quickly find two very special women who have become excellent caregivers for Dewie. Without them, things would be very different. And finally, Dewie's gift for happiness is the one thing that makes everything else possible. Her positive personality not only helps her continue to enjoy life but it rubs off on the rest of us. She's a joy to take care of.

Our biggest challenge is communication. Since she got her trach last year, Dewie can't talk so we use an "alphabet board" and we've gotten pretty good at it but we still would like to find a way for her to use a computer like Stephen Hawking. Dewie's friend Feather is working on an idea that might just allow that.

Anyway, that's an overview and I'm happy to report the good news. Thanks for reading. Whenever there is an update here, we plan to send out an email saying so. Dewie's greatest joy has always been the people in her life and that's what this blog is all about - allowing her to stay close to you.

-Pete

Hello Everyone!

Dear Friends and Family,

Ever since I was first diagnosed with ALS in October, 2007 I have received calls and emails and post cards and letters from all of you and I love them. At first I could respond by myself and was able to keep in touch with you and I so love staying in touch! But then as I lost the ability to communicate except with my eyes, I have lost touch with so many of you.

A while back my good friend Cathy Woodyard made a great suggestion. She said I should try starting a blog so I could post messages and photos and then you could read them at your convenience and reply where I could see it.

So here it is! Lets get started!