July 1, 2005

Dear Friends,

          Several of you have asked for an update on my condition. I have hesitated to tell you because of an episode involving an old friend of mine whom I'll call Sam (not his real name). You see, Sam is a guy who wears his heart on his sleeve. He is as honest a man as I have ever known, almost to a fault! One never has to wonder how Sam is doing, because he will let you know, usually without being asked. One day, while in the hospital after a minor surgical procedure, Sam was walking down the hall and overheard one of his nurses say to another nurse, “If you run into Sam, don’t ask him how he’s doing because he’ll think you really want to know.”  Well, needless to say, Sam's feelings were hurt by that comment. That story has stuck with me, so I have always tried not to take too seriously the question we all ask, but don’t really want answered.

But since y’all asked, here is an update on my present condition:

I have lost functional use of my arms, and my hands are limited to only small movements of my fingers. It is those small movements that permit me to operate my computer.

I am able to access my wheelchair mounted computer using the Tracker One device, pictured on the left. This device permits me to move my mouse pointer via an infrared sensor (the Tracker One) that responds to my head movements by locking onto and tracking a silver “dot” that adheres to my reading glasses. A switch, plugged into the Tracker, is attached to my left pant leg with a safety pin. Once the switch is positioned under my index finger, I am able to type using an onscreen keyboard by SofType like the one shown below. The Dragger Toolbar feature facilitates single/double clicks as well as right clicks and dragging & dropping. The Word Prediction feature displays word or suffix choices as I type the letters. If the desired word appears, I simply click it and it completes the word’s entry into my document. I can also add words to the list. That’s it for the tech talk. 

As for my legs, I can still bear my considerable weight (210 lbs.), albeit with support assistance from Sharlene. I am barely able to move my feet once I am up, so transferring from wheelchair to bed/shower-bench/commode and back to my wheelchair presents quite a challenge. Sharlene is my unsung hero. She does yeoman’s work moving me from place to place and providing everything I need to keep me comfortable and safe. Everyone comments on my positive outlook, good humor and cheerful attitude. What goes almost completely unnoticed and, to my shame, too often unappreciated, is all of the work Sharlene and our kids do to assist me and make my life as comfortable as possible.  

We now have a Lift-Aid 2000, like the one pictured below, installed in our bedroom. Using it enables Sharlene or anyone else to easily and safely transfer me in or out of my bed and wheelchair, as well as on and off my bedside commode. Its design allows access to virtually the entire room, traversing from side to side on the center beam, front to back along the side rails.

My abdominal and neck muscles are greatly weakened, (so much for my dreams of developing an abdominal six-pack), making it more difficult to transfer out of my wheelchair because I have a hard time holding my torso upright. When I sit in my wheelchair, I have to rest my head frequently because my neck gets so tired. Since I operate my wheelchair with my head, using switches located in the headrest and side pads, the loss of neck muscle control will eventually result in the loss of wheelchair control. Of course, one look at our home’s walls and doors might easily allow one to reasonably question whether I ever really had it under control in the first place!

Those of you who have spoken to me recently will know that I now have tremendous difficulty speaking clearly and making my words intelligible. I am using my text-to-speech software program a lot more these days.

On May 26th, I had an external feeding tube inserted into my stomach. I still eat an unmodified diet, however the day will eventually arrive when I will have to take nourishment via the tube.

Breathing is becoming more difficult as my forced vital capacity continues to be degraded. My pulmonary function is considerably diminished, measured at only 11% of normal capacity during my last clinic visit. I use a bi-pap for breathing assistance at night, while asleep.

I have been enrolled in hospice organization since last fall. They send a health aide to our house three days a week to shave and bathe me. A nurse visits once a week. That lessens Sharlene caregiving tasks.

Other than that, I am in great shape. I really do mean that! Throughout this whole period of declining health, my number one goal has been to continue serving God in whatever capacity He allows. I know that my Redeemer lives. I also know that a lot of folks wish I wouldn’t talk about Him so much! But how could I not talk about Him when He has assured (guaranteed) me a seat at the marriage supper of the Lamb, a seat bought and paid for with Christ’s blood at Calvary? Then His glorious resurrection from the grave sealed the deal! I know now what the apostle Paul meant when, under inspiration of the Holy Spirit, he wrote, “For to me, to live is Christ and to die is gain.” Philippians 1:21. Immediately before that, again under the Holy Spirit’s inspiration, he wrote, “Yes, and I will rejoice. For I know that this will turn out for my deliverance through your prayers and the provision of the Spirit of Jesus Christ, according to my earnest expectation and hope, that I will not be put to shame in anything, but that with all boldness, Christ will even now, as always, be exalted in my body, whether by life or by death.” Philippians 1:18b-20 I hold tightly to God’s promise in what I refer to as Alfred E. Neuman’s (“What? Me worry?) life verse, ”Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7  I found that peace of God, which surpasses all understanding!  I found it 29 years ago on June 6, 1976 in the person of Jesus Christ. My hope and prayer is that all of you “healthy” people will find Him too, before it’s too late.  

 Sincerely,

Wes