Letter to Caregivers from Peggy

February 26, 2008

Dear loving family and friends,

I am delighted to tell you that I am almost up to par with ERICA again. It’s been a long time—almost a year and a half. I have learned how to apply eye drops in a way that allows the glint to stay in my eye. You all know the importance of the glint! Also, it costs about $10,000 a month for my care after insurance. This is why we fundraise. So we are planning several fundraising events. Look for details on the blog at pegslegs.blogspot.com. Bookmark the address—it’s a hot one. It’s a hoot!

Let me tell you how I survive a day at a time happily. It’s you! How many people do you know who get to spend quality time with their best friends everyday? I have that privilege everyday. I actually get to know my friends and enjoy them. I am never bored or lonely. Even when I have a lot of things to do I find that giving in and participating in the conversation is so much fun. At 61, I am finally learning to relax thanks to you. I am awed by the power of your love.

I am happy. However, to think that I am a “Pollyanna” would be totally unrealistic. My mood most days is cheerful. I am passionate about my family, especially my grandchildren and grandnieces/nephews. I am constantly thinking about color and my head is swimming with ideas. I can hope because of you, my family, and treasured friends. I find that my greatest source of hope is faith in The Creator.

I realize that many of you feel frustrated because of the difficulty in reading my eyes. First, I can remind you that I am looking at the box that has the letter I am looking for. Then I look at another box—that box simply shows you the number for the letter I want in the first box. Sometimes I will look at a box for quite awhile it can mean that I either want the letter and number in the same box, or I am stuck. The above mentioned letters with the twin numbers are 1-1 (A), 2-2 (F), 3-3 (K), 4-4 (P), 6-6 (Z). If you’re not sure if I am stuck, just ask for example “is F correct”? I know how hard this seems, but I enjoy talking to each of you. I think you could learn a few basic words such as: yes, no, pm, gel (refresh liquid gel), hi, yankauer, suction, I love you, kisses. Cold (more blankets), hot (ask if I want you to pull all blankets off or just pull down to legs), cuff (ask if tubes need to be pulled off and put back on because of gurgling and tubes may possibly be twisted). Be sure to put the yellow sponge back after pulling the tubes off.

Know that I do not get frustrated when you can’t read my eyes. It is different for me because I feel so desperate to communicate. Each letter is a tiny victory.

I know that you all have questions for me, but I also know that many of you are afraid to ask. Questions such as: issues dealing with end of life, what it’s like to be locked in and my choice to use new ALS drugs. I would be happy to talk about any subject matter you choose. By the way, I have chosen not to take the malaria drug. The side effects would kill me. It would be as if I were taking heavy chemo. The side effects include nausea, diarrhea, skin lesions and mouth sores. I hope you will understand my reasons for this decision. However, I have been following the work of Dr. Timothy Miller since early 2004. I have great faith in him. His protocol stops ALS by eliminating the gene. I got a great response from Dr. Miller. I get to start by summer. I don’t have to take a placebo. If you want to go to his website, google him at “Dr. Timothy Miller UCSD ALS”. I love all of you. Thank you all for being my hands, eyes, voice, and Legs!

Love,

Peggy