Merry Christmas

To all my friends and family I wish a very Merry Christmas and a Happy New Year. This year I am especially grateful for your love. I am blessed to be here with the ability to enjoy our relationship. May you also be blessed. Love, Dewie

Team Dewie Q

The Walk to Defeat ALS this year was a great one. Attendance was way up and I'm sure donations were, too. Our experience this year was special because even though we didn't actively fund raise like last year our team doubled in size and we still raised nearly $500 thanks to your big hearts. Our loyal walkers from last year included Bob, Mary Ann, Maria, Gabi and Rosa. New walkers this year were Sarah, Mabel and her son Joshua and my long-time California friend Deborah who stayed with us for a few days. We were especially uplifted to be joined by the family of ALS champion Dr. Paul Lanier, who wrote a very inspirational book about his journey with ALS - "A Change in the Flight Plan". A special thank you to Dee, Marilyn, Katie, Meagan and Brittney. And to all who walked and donated this year - Thank You. You warm my heart. Team Dewie Q will be walking again on February 11th at the MDA Muscle Walk. You can join our team or make a gift by clicking Here.

Finally, those questions. I still have several left to answer and I haven't forgotten them. I am taking my time though, huh?

Love, Dewie

Thank You Merilly and James Taylor!

I was blown away last week when in the mail I got a piece of sheet music for James Taylor's song "Carolina in My Mind" signed to me by James himself! My good friend Merilly read on the blog that James Taylor is my favorite musician and she lives not far from him on Martha's Vinyard. So she just took it on her wonderful self to see if James would like to send me something and lo and behold, he did!

Thank you both for such a kind thought and gesture. And thank you to all of my friends and family for all the love and support you give me. Your love and friendship are what make life such a beautiful experience. I love you. Dewie

More Answers

I have taken a break from the blog for a bit and I've been wanting to come back to it so here goes.

Barbara noticed one of my blog posts says 12:52am and she asks, "Are you a night owl?". Heavens, no! I go to bed early most nights. But Pete works on the blog sometimes when he is on a trip and posts from far away time zones, so that's why the blog is updated at odd hours.

And Mary Ann asks, "What is the Fall hair color palatte?" My answer is "Forever Blonde!" Until I change my mind...

Love to all,

Dewie

Nancy Asks: Recently I've seen obituaries that mention ALS. Did you know them from the support groups?

In the support groups, we have made friends with others who have died and its always sad. One of my close friends from the group died last year. She told me she was tired. For some, ALS symptoms can be painful. I think many worry about the burden their care places on loved ones. Some just don’t want to live with a trach.

I am so grateful that I have no pain, and for the love of my family and two wonderful caregivers, and for enough strength to enjoy living this way.

My Favorite Music

Deborah asks: What is your favorite music these days? Alex asks: Who is your favorite singer? And Clay asks: Who is your favorite musical group?

When I used to sing I sang Mexican folk songs like Malagueña. I still enjoy music in Spanish and I like Juanes' CD "Un Día Normal" and Los Lonely Boys' CD "Los Lonely Boys".

Lately I have also been enjoying Michael Buble's CD "Crazy Love". Michael's arrangements of familiar songs remind me of my Mom's style when she used to sing.

But my all-time favorite singer is someone whose songs Pete and I used to sing together and whose concerts we still go to: James Taylor. I love listening to his concert CD "One Man Band" and also his recent CD with Carole King.

Thanks again to all of you who are still asking questions. I am having fun answering them.

Love,

Dewie

Barbara Asks: Are you Keeping Pete Under Control?

Thanks, Barbara - I couldn't resist this question!

Yes, I am!

I've played so many tricks on him and he is so wonderful and loving to me. We are having fun together. They say it takes a long time to train a husband, and they say a woman's work is never done - but in this case, maybe it is!

What about you? (same question)

Marlene Asks: When you wake up in the morning, what are your thoughts before you start the day?

Marlene, I'm afraid I don't have a deep answer because the truth is my thoughts center around my needs and my world has gotten smaller. Or, to put it differently, you could say I've finally learned how to live in the moment! I think I'm pretty positive, though.

(From Pete: Indeed Dewie is positive. And even though her "world has gotten smaller", she still impresses me daily with her incredible thoughtfulness of others.)

Thanks for the Questions

Thank you to everyone who has repsonded here or by email with questions. Deborah asked if I remember the womens' retreats we had in Bixby Canyon. Yes I do. I loved our group. Those retreats were in 1975 and 1976 when my beautiful Mom and her John were going strong there in Bixby. They made us welcome in that very special place. Today John's son Peter still lives there and my aunt has built a house on the lot right next door. I was there last in late September of 2004 for a family memorial for Mom, who moved to Plano and lived close to us for her last few years. Thank you for reminding me of such a good memory.

Thanks again to everyone for your responses. I have many questions to answer now and I'm excited for the chance to communicate. Keep the questions coming. This is fun!

Love,

Dewie

Ask Me a Question

One thing I really miss is talking with people like I used to. My alphabet board is slow and the pace of normal conversation is fast. But with written communication, the pace is slow and I can participate. So I have an idea to allow more interaction between me and my loved ones (that's you). Its a game called "Ask Dewie", where you ask me something and I can answer on this blog. So if you have a question for me, just reply here or email and I will answer. To reply here just click on "Comments" below and scroll down to the white box. You wanna give it a try? Ask away!

Love,

Dewie

I'm a Blonde!

Well, its the middle of August and its hot. And after all these years I have gotten bored with my thin, brown hair. So a few months ago I dyed my hair red and that was fun, but I kind of enjoy this freedom to just choose your color so I decided to try being a platinum blonde. I love it! Not only am I having more fun, but for the first time in my life, I have thick hair. The color treatment did it. Yay!

No other earth-shaking news to report. Pete and Sarah and Maria and Mabel still take really good care of me and Pete is still flying until he retires in March. I still enjoy connecting with friends and family and I'm looking forward to cooler weather. I hope your summer is going well and maybe you've had a nice vacation. Either way, I'd love to hear about it. You can tell me all your secrets. I won't tell anyone!

Love,

Dewie

Update: Dewie is Well

Its been a while since we have updated here but things are pretty much the same. Medically, Dewie is stable, meaning her lungs are clear and her breathing is great, her diet is good and she has even gained some weight! Her skin condition is good and her emotional condition is very good! So it sounds ironic but it is accurate to say Dewie is healthy!

Our biggest ongoing challenge is communication. We still use the plexiglass "alphabet board" and even though we have experimented with alternatives, the board is still the best for us - especially since we have gotten so used to using it. Even so, the board is slow and tedious and requires lots of energy and patience from both parties - so Dewie's expression is limited by that but it feels good when we succeed.

Another important part of our lives is to do as much as we can for Dewie to express herself, interact with her friends and family and stay connected to the people in her life. That's the main purpose of this blog. Several of you are planning to visit in the next few months and we are excited to see you. And we still go out to movies and shopping and to performances often.

So I'm happy to post a good report. I'll finish with a story.

In January I was in Minneapolis for training for a few days and Dewie was scheduled for a haircut while I was gone. One evening in Minneapolis I got a call from Mabel who told me Dewie had asked Melanie (her stylist) what she could do to help her with her lifelong complaint about having thin hair. Dewie wanted to know if she shaved her head (!), would it grow back thicker? I said, "Mabel, please tell me Dewie didn't shave her head!" Mabel informed me that, in fact Dewie had done just that!!! In a panic, I called Sarah to confirm and she told me that her Mom was home watching TV with a scarf wrapped around her bald head!!! I asked sarah to email me a photo of Dewie and she did. I opened the email and saw Dewie grinning at me from a photo captioned, "Gotya". The photo is above.

So when I got home, Dewie told me she wanted to dye her hair red. I was so happy that she HAD any hair to dye, I told her that would be fine with me. So now Dewie is a redhead and she is beautiful. And Mabel is still employed but she is on probation and I'm sure she will be more careful in the future about letting Dewie talk her into things.